How do I get through the day with two autoimmune diseases?
June 1, 2012 9:03 PM   Subscribe

Within the last month, I've been diagnosed with two autoimmune disorders. I'm tired, everything hurts, and my life is pure insanity right now. What are your hacks for getting what you need when life simply isn't giving them to you? What about from the ones you love?

After years and years of dealing with a doctor who refused to help me with my symptoms/complaints, I switched doctors. That doc ran some tests and, upon getting some positive results, promptly sent me to a rheumatologist. The rheumatologist spent about 30 minutes looking over all my past bloodwork and talking over/looking at my symptoms, and diagnosed me on the spot with Sjögren's syndrome. She ran a ton more tests (some of which we haven't gotten back, but most we have), and a few came back with some results which led her to further diagnose me with Hashimoto's disease. I see her again next week.

Also within the past month, I researched/interviewed/put my heart and soul into a job opportunity for which I was the 2nd choice (the top choice took the position), I recently started a heavier load of classwork at my ivy university (this is for my BA and a nonnegotiable part of my life), and on my doctor's orders, started going to the gym. All while working a full-time research position in which I have tons of responsibility, including management of undergrad employees who literally get paid the same amount as I do. My boss, who had totally innocent intentions, recently asked me in one of our lab meetings whether we should increase their pay in order to keep them interested/dedicated, and it took all of my strength to not fall into pieces at this suggestion. My life is only going to get busier/more insane as the next few years go on.

Needless to say, I'm being stretched pretty thin, and it's hurting me physically and mentally. It's been really hot the last few weeks in my city (a northeast metro). On Tuesday night it was especially hot, and at around midnight, still totally unable to fall asleep, I rolled over to look at my phone only to discover that I had blurry vision in my left eye. I was probably rightfully upset at this and woke my husband up to check if there was something wrong with/in my eye, and there wasn't. My doctor insisted that I go to an urgent eye care center the next day, and the eye doctor told me that it was due to my dry eyes (from Sjögren's).

Later that day, I asked my husband if we could compromise by keeping the window air conditioner in the bedroom on a cooler temperature at night and running the central A/C on a moderate temperature on the weekends we're home. I was fairly insistent that it was stressing me out and causing my symptoms to flare, as well as keeping me from getting much needed sleep. Since we have a budget plan for our electricity, I thought at worst it would be maybe another $10 or $20 a month overall. This sparked a huge debate that ended with him saying "No, we can't afford it", lecturing me, and him storming to the bedroom and slamming the door, leaving me to sleep on the couch (so much pain the next morning!). The very next day, he goes to the pet store because he's in the area (not for food or anything we actually need for the dog), and spends ten bucks, tweeting "I like [our dog] more than I like a $10 bill." This happened later on the same day I got the news that I also had Hashimoto's. :(

...Money is a huge issue. My medical costs have gone up a huge amount in the past year and it is undoubtedly one of the reasons my husband is on edge. However, I've tried to convince him that if we don't spend a little amount of money on things that are preventative, then we may end up spending more money on treating issues. This just one example, and most of the time I honestly don't ask for anything at all. I rarely ask for help around the house or help with dog walks. I don't even ask him for massages! I swear, I am not high maintenance at all, and I try not complain a lot when my symptoms are bad. Sometimes I say "I'm really tired" or "My hips really hurt today", but that's really the worst of it.

Fatigue, joint pain, and migraines are my worst symptoms. I'm in pain all the time. I've been trying to keep positive, but things are really getting me down lately and I start wondering if giving up is worthwhile. Obviously when I have issues like sudden blurry vision in my left eye, I miss work, sometimes even school and social stuff, and I start to feel like things are falling apart. I can't ask for more time off from work, as I'm trying to get a better position in my lab. I can't quit school because I'm useless in my field of interest unless I have *at least* a BA. I've thought about disability, but I'm only in my late 20s and I can't fathom actually taking that plunge and totally giving up on everything I've worked for. Some days I want to jump off a bridge, others I'm merely surviving, but there are definitely days where I'm happy. I love doing my job and school is really exciting, but when I have days that start at 8am and end at 9pm, and I still have to come home and make dinner, clean the dishes, walk the dog, do some laundry, take a shower, and remember to take my medicine all within a three hour time period so I can get to sleep by 11pm and wake up by 7am... I'm almost in tears writing this. I can't imagine this is sustainable.

People who have autoimmune diseases or other such things: how do you survive life? What gets you through the day? I have no one I can talk to about this. I love him, but my husband hasn't read any of the information I've given him on my autoimmune illnesses, and he's hard to talk to about this stuff. I think this is understandably stressful for him, too, and he's mostly in "avoid" mode right now. We're in therapy, so that's helping. I don't feel like it's appropriate to be sobbing/whining to my friends, and I can't even call my mother and talk about all this because the conversation inevitably turns to her searching WebMD for what autoimmune disorders SHE might have that her doctors missed. I feel so alone in this and I have no idea what to do or how to cope or even how to survive day-to-day. I'd give pretty much anything for a robot body! Can you help? What are your hacks? How do you keep your life together? Have you tried medications? My doctor mentioned Plaquenil. Has that helped you? Will I survive this? Is it going to get better? Worse? Is it worth it to make compromises and spend more on the things that will make me more comfortable? Is that just a psychological thing? Does it even matter??

On preview, I sound suicidal but I'm definitely not! I would very much like to continue living!
posted by your mom's a sock puppet to Health & Fitness (27 answers total) 19 users marked this as a favorite
It sounds like you're going to have to consider dialing back your commitments. Do your supervisors know that you are ill? They are required by law to make reasonable accommodations. Your career may not advance as quickly as you'd like, but it shouldn't ruin the track you're on. Likewise with school, can you step down to part time and take longer? They, too, are required to make accommodations for disability and illness. Again, it'll slow you down, but not stop you. Your goals may have to change, or your timeline for those goals may have to change, but you have to think about the long run, too.

Your partner is understandably protecting himself by going into denial. I think you need to sit him down and say this is what I need to stay well, and this is what it's going to cost, so let's figure out how we're going to do this because it's nonnegotiable.

Is there an autoimmune support group in your area? You might find some help there, too. Also, seeing a therapist for yourself.

Finally, and if nothing else, turn on the bat signal and bring your friends into it. That's what they're for--if the tables were turned, you would be happy to spend an hour listening to them and helping them think things out. The more they understand what you're going through, the less stressed out you'll be about asking for help, cutting an evening short, not going out as often, whatever you need to preserve your health. There's no extra credit for suffering in silence. You don't want things to reach a crisis before you bring them in--(a) their support could help stave off or minimize a crisis, and (b) they'd be pretty upset to learn that you've been suffering all this time and never told them.

Sorry you're going through all this. I wish you luck and peace.
posted by elizeh at 10:01 PM on June 1, 2012 [6 favorites]

My wife has a variety of intertwined conditions including crohn's disease and anemia that put her physically in a similar position to you. Unfortunately I can't give you much help - my wife is a stay-at-home mom of one daughter. Some days I know I'll have to stop and get take out on the way home. Some days fewer things get done. Some days I take over some of her tasks. Some days I even get angry that I feel like I need to do more than my share.

But we have good health insurance and I make a good salary and that makes things a lot easier. It's easy to say "let yourself have a break and don't worry about the electricity bill", but you're not really in that position. I don't see how you can keep this up, though. It sounds like you need to to take some time off and reduce your workload. I don't know how you'd accomplish that. I do know that my wife is better both physically and emotionally now that she doesn't work full time and stress about paying bills.
posted by tylerkaraszewski at 10:04 PM on June 1, 2012 [1 favorite]

Seconding bringing your friends into your support circle. It is so not whining and crying to them when you're in pain ALL. OF. THE. DAMNED. TIME. If they don't know that you're in pain, then they have no idea why you're canceling plans, moving slowly, have no money, etc... If you loop them in, they will be far more understanding.

If there are no support groups in your area, there's this group online (also, the spoon theory is an excellent way to explain your chronic pain to people) and this one too. They seem to work for some people.

As for dealing with day to day stuff. It's all about keeping it within your thresholds. Don't stretch yourself too thin. Your health is the most important thing. You are doing yourself no favors by being strong. Don't baby yourself, but don't push beyond your limits either. Do what you can, then stop. It's the best thing you can do for yourself.
posted by patheral at 10:09 PM on June 1, 2012 [1 favorite]

Ok, this is nuts, and you know it.

I can only suggest what seems obvious to you already: you've got to compromise somewhere, or your body will.

This must be difficult for an ambitious person to accept, but making changes in your life situation is likely to be a more effective prophylactic against the worst than would buying an air conditioner (though yes, that sounds like it would help things).

Cutting back on courses & negotiating with your boss around hours and/or pay (possible?) are the sensible things to do. Agree that the BA's a necessity, but do you really have to do it within the time-frame you've set? You can't guess much you might lose by tagging a year or so on to it, but you can feel what it's costing you now.

Also nuts: that you're doing the lion's share of the housework, and not asking for 'help'. You need practical support.

(Ok, not 'nuts'. Obviously your relationship's been strained, probably for a while, and you're tripping over yourself not to burden your husband. Only this strategy is adding to your stress, and making you less available to the relationship. When, between 9 and 11, are you able to be together?

I can imagine it being difficult for your husband to find patience and empathy for processes he doesn't understand, and may attribute to you, even subconsciously. I can picture him feeling abandoned [for the pain, for the hours away], and maybe resentful of these necessities. Even the best-meaning people fall into this kind of irrational thinking. Am also thinking that this (illogical) resentment, if it exists, might be heightened once you get into the trial and error of any hormone treatment.

I'm very glad you've got counselling. It's imperative that your husband find a way to see things clearly, and critically, understand your medical issues. (And, jesus, pick up a damn mop.) I'm sure that finding & talking to individuals - and couples - who've been through similar paths will help.

This, though - meaning, working on your marriage - will take time away from coursework, as well.

Please just be sensible.
posted by nelljie at 11:21 PM on June 1, 2012 [2 favorites]

If there is ever a time to sob and vent to your friends, this is it. Good friends will be more than happy to be a shoulder to cry on and a source of support. Some may even be grateful for the opportunity to reciprocate because they have received similar support from you or even other people (a pay it forward kind of thing). It may feel uncomfortable at first since it sounds like you are someone who is used to putting others' needs before your own, but it will get easier with practice. Your husband is going through his own process of accepting and understanding what is going on, and while it would be nice if he could do this a bit more gracefully and be overall more supportive, it sounds like it's just going to take some time for him to process it all. It is good you are in therapy. I'm not clear if it is solely couples therapy or you are also seeing a therapist on your own. If you don't have a therapist who is yours and yours alone, I would suggest getting one. Don't stop the couples therapy, reach out to friends, and keep searching for support groups (online and off), but it sounds like right now you need a person who you can be completely honest with and not worrying about taking care of this individual or anyone else who may happen to be in the room.

Also, give permission to yourself to be angry/sad/frustrated/overwhelmed/whatever else you are feeling. I get the sense you are trying to hold it altogether, which eventually will need to be the case, but, in this moment, with this life changing knowledge, you are entitled to feel every single negative emotion that occurs. Letting it out and temporarily indulging it is a healthy thing that will help you move forward. You've been dealt a tough hand, and as gratifying as it may be to have answers since they generally lead to solutions of one degree or another, it also makes your problems real and unavoidable. All of this will eventually work itself out. You are still in the initial shock and wtf of it all. I'm not saying it won't be without its challenges, but it won't always be this confusing, stressful, and overwhelming. Lastly, while you have a very full and demanding schedule, make the most of your down time. Since time off is an issue, I won't suggest taking some time away from your husband and everyone to just chill and do whatever makes you feel good. That said, you need to make time for some self-care, which may seem self-indulgent, but is totally necessary. Even if it is 30, or even merely 15, minutes here or there allowing yourself to relax, escape the world for a while, and just do whatever makes you feel better, that will allow you much needed moments to decompress and just be. I'm not saying you should meditate. Maybe 15 minutes playing a game on your smartphone or reading a chapter or two in a book will gives you a time out and help you recharge your batteries so you can sally forth with a bit more ease. Best of luck to you!
posted by katemcd at 11:25 PM on June 1, 2012 [3 favorites]

If there's money to give the undergrads in your lab a raise, what about you too? How long have you been there? Would this be an appropriate time to ask for a raise? Or maybe to ask for a decrease in your hours without a decrease in pay, given your medical condition(s)?

Can you take your husband with you to your next doctor's appointment? Maybe hearing about your condition directly from the doctor would help him to acknowledge it. Sounds like some more help from him around the house could make a big difference to you!
posted by snorkmaiden at 12:02 AM on June 2, 2012 [1 favorite]

Having your own therapist is important. The thing with these diseases is that you'll never be rid of them. It's a hard thing to wrap your head around. I was hit with three dx's a little over a year ago, Sjögren's being one of them. I had to take extended medical leave as things got really bad for a while. I'm only about to attempt a return to work.

The good news about getting the diagnosis is that you hopefully also now have a treatment plan. Give it time, hopefully you'll respond well and your energy levels will increase and pain decrease. Don't give up on the career yet. Your conditions might become well managed, to the point that you can keep up a relatively normal schedule and life.

I've read the "Spoon Theory." It doesn't vibe for me, but I can see how it might help others understand what's happening with you. I also found online support groups helped at the beginning when I still had a ton of questions and didn't understand the meds and how my conditions might evolve. I would also encourage finding local support groups. Having someone to talk with that shares your condition is oh so valuable.
posted by michswiss at 12:43 AM on June 2, 2012 [3 favorites]

Hopefully, with time, your husband will figure out that this is a real thing and be able to be more supportive. A few of my family members have autoimmune disorders and one problem is that they appear to function normally, especially if you don't see them during downtime.

I agree with other posters that something has got to give-- like maybe a reduced course load for one semester until you get treatment underway-- but if your husband is not picking up slack, I'd be afraid of housework and pet care simply expanding to fill the time your courses took. And maybe the courses are what's actually feeding your soul. So I'd make sure that he accepts, at least in principle, what you are doing and why.
posted by BibiRose at 3:36 AM on June 2, 2012 [1 favorite]

IANAMD (though I'm on my way) but I did spend two years working at a Sjogren's syndrome clinic.

Sjogren's is a tough condition to treat, since there aren't really many medications for it. Plaquenil is certainly worth a shot, but the most important things are to keep your mouth and eyes well hydrated -- always carry a water bottle and basic artificial tear type eyedrops. Advil and other NSAIDs can help with the aches. Use mouthwash regularly.

If you're definitely hypothyroid from the Hashimoto's, you should be on thyroid hormone replacement from your doctor. Low thyroid hormone levels can lead to fatigue, weakness, depression, headaches, etc, and it sounds like you have all of these. If you've just started thyroid hormone replacement, it can take a little while to kick in, so hold tight and be patient. All these symptoms should improve once your hormone levels are in balance.

That said, definitely don't lose hope! Both Sjogren's and Hashimoto's are diseases that can be a hassle, but once you have the right meds and basic lifestyle adjustments you shouldn't have to worry much about them day to day, and the odds of Bad Things happening is pretty low compared to other autoimmune diseases like lupus, scleroderma, rheumatoid arthritis, and so forth. You'll be able to go on with your regular life with minimal limitations. This week -- you might just want to take a sick day or two to relax.

Memail me if you have more questions.
posted by demons in the base at 3:43 AM on June 2, 2012 [7 favorites]

People who have autoimmune diseases or other such things: how do you survive life? What gets you through the day?

I have an autoimmune disease. The following has helped me.

1. Appropriately medicated, and with appropriate lifestyle choices, I am mostly okay now. You should not look at particularly deep troughs as indicative of what the illness will be like going forward; those bad days are not your life sentence. Living with a chronic illness means there are good patches, and bad patches. These can be intrinsic to your health, or a reaction against external conditions, but always remember when you're in a bad patch that there will be good patches, too. When I look back to before I was diagnosed and immediately after (where you are now), I marvel at how much I was able to do, and what I put up with because it had snuck up on me slowly.

2. You have a chronic illness. You may not be able to do things you did before, the same way you did them, at the same intensity. It sucks, and it's hard - it took me literally years before I learnt my lesson enough to behave with relative consistency, and I still stumble every now and then - but it's a fact. It felt a bit like giving in, for me, but I needed to acknowledge my illness; it did make me different, and it did change my needs and lifestyle, however much I hated it. It sounds weird, and maybe it's just me, but I needed to make a commitment to my illness - really, a commitment to myself: I will prioritise my quality of life and needs.

3. Speaking of priorities, I needed to figure out what was truly important, and leave the rest behind. This was a lot easier when I realised there would be myriad opportunities to pick back up, or realign my priorities later on. In a bad patch - especially in a bad patch - you have to accept you cannot do everything, or sometimes even very much, and that's okay you're sick. Don't waste time on shit, and definitely don't waste time feeling guilty. Guilt is for the well. From your question, you are doing to much; you are compromising your health, possibly your work, and definitely your relationship, you can't be everything. Also, turn that motherfucking air conditioner on. Take painkillers, take whatever you need to take. If you can do something to ease your pain, you do it. You are in pain; they don't give out medals for suffering, and the mental and physical resource you gain can be deployed elsewhere.

4. Neither be ashamed, nor afraid, to ask for help. You have a chronic illness; you have special needs; you are entitled and eligible for support. It is your right. The government, and your workplace is obligated to support you, and people who love you should do so as well.

I wrote a comment on the blue, just the other day, talking about how having a chronic illness can be very isolating, feel like you're living in your own country at times. I will not lie: It is very difficult for other, healthy, people to understand what you're going through, and what it means. Your husband doesn't understand, it sounds. It's easy to build up resentment and hurt when this happens, and also to be very insecure about reaching out, asking for help, sharing your fears and emotions when you think people might dismiss them or just not understand. Make the time, to make them understand; it's worth the investment. Bring him along to the doc's, show him stories from support groups, whatever it takes, show your most naked fears, whatever. It sounds like you're on the right track with this, anyway, but do the same with your parents, siblings, friends. You don't have to let your illness define you, but is an undeniable part of you at least for now, and the more people that understand what that means the easier things will be for you. When you have a chronic illness you need extra support, there's no getting around it. Do what you need to do, to get it.

When you're sick, you're allowed to be selfish - you are protecting yourself. This all said, living with someone who has a chronic illness has its own share of challenges, so where possible, try to share the load between family, friends, partner, and colleagues. If you divide it up, it's a lighter load for everyone to carry, and you won't feel so guilty, either.

So with that out of the way, my concrete suggestions:

1. Turn the air con on, and spend money, take time, whatever you can do to ease your condition, do it. You will be able to scale back some of this when you're getting good treatment and in a better patch. If your husband thinks you can't afford it, make it his problem and get him to find a cheaper fix (also, just as a note, unless he locked the door, your husband didn't make you sleep on the couch; you did. Embarrassing and annoying and hurtful as it is, don't exacerbate your condition because of pride, it's not worth it. And try not to externalise your choices. You do have choices, as limiting as they can feel with an illness. Forgetting that is super disempowering. You shoulda gone in there and slept on the bed; if he didn't like it. the couch is for the able).

2. You're in a university. Talk to your Disability Services Support people - it may not be called that, it may just be a subset of HR but there is someone in your organisation whose role is making life easier for people with disabilities and chronic illnesses. They can help you, and they are there to help you, reach out to them. You may be entitled to some free counselling through your university, too - take it! If you cannot find these people, or maybe even if you can, flag this with your manager: explain the problem, present an action plan of the kind of support you need or a request for what you can drop, or shift, or substitute work for, and ask for their support and approval.

3. Talk to your specialist about support options. They see dozens of people just like you; they will have good suggestions ranging from medications, to "hacks" to support groups. They may also have some advice about going on disability, and if you qualify hell yes there's not shame in going on it. I think you're young - are you young? You have plenty of time to finish all this shit, you'll get there, taking a few months off to get better is nothing. I fucked around for years and I wasn't even sick then!

Chin up, OP, you'll get there, I promise you. Like any big life change, this will take a while to adjust, but things will get better, they surely will. By acknowledging your illness and its place in your life, you will find much power and strength. Paradoxically, when you start doing that, it will stop defining you, because you'll stop thinking about what you can't do, and start thinking about what you can. It's a journey, and a long one, but it doesn't have to be a wholly unpleasant trip. Feel free to memail if you want to chat any time. :)
posted by smoke at 4:15 AM on June 2, 2012 [29 favorites]

On the paint front: Have you actually asked your doctors for better pain management options? I may be somewhat like you personality-wise, and I know last year when I was going through a similar I'm-sick-but-refuse-to-slow-down period I didn't actually ask about pain meds, because damn it, I should be able to cope with this. I think I thought the doctors would spontaneously give me the meds because it was so obvious I needed them, or something.

Once I finally got a diagnosis (not autoimmune, I should note, although autoimmune was high on the list of things they were looking at), a few months later, the specialist said "Well, we can give you [drug] for the pain to manage this", and I think I almost started crying, it was such a relief. I filled the prescription the next day and I have been in way better shape since. I still get flare-y bouts, but now there's something I can do about them. Night and day.

With your husband: It kind of sounds like when you ask for help, you're mostly just asking about things that involve money? I think you need to also ask for stuff like cleaning help. And start complaining. This is really hard, and feeling like you need to go through it without complaining or being a burden or seeking support, well, that's probably making it about a billion times harder. You can ask for help and you can ask people to listen to you.

If you're taking undergrad courses, is there any way you could have therapy resources as well? I know my college offered free counseling -- hard to get in sometimes, but it was a good resource. Having someone to talk to and help you process this would be huge.
posted by pie ninja at 4:46 AM on June 2, 2012 [1 favorite]

Things that I have found helpful that you also might:
- complaining with friends who are also ill;
- swallowing your pride and turning down exhausting social invitations (which sometimes means any social invitations, and/or canceling at the last minute);
- taking a much lighter course load;
- admitting to yourself little comforts matter, and not ignoring your own needs. The consequences to things like not having climate control or eating poorly (fast food, skipping meals, whatever) are real now, and you shouldn't ignore them.
- if any over the counter NSAIDs help you, go for it. Right now you are clearly working on making things less awful, and this will help. I found aleve worked for me when others didn't.
I also suggest that you ask for a raise. It sounds like even just a little bit more cash flow could do wonders for your health. Also, taking fewer classes = paying less tuition = affording more little needed things, right?
posted by mismatched at 5:50 AM on June 2, 2012 [2 favorites]

Sorry to hear about your condition and the stresses associated with it.
I have arthritis in my spine. It sucks! Like you, I am in my mid - late twenties and I have been dealing with this for a decade. Doctors took their time, tons of tests, luckily I had (past tense... grrrr) excellent insurance, otherwise I wouldn't have been able to have the tests I need and the appointments. I don't know what it is like to not wake up in pain, it is a complete downer that my first thought every single morning is "goddamnit, this fucking sucks!"
Like you, I am in school and work full time. It can be difficult, but this is my two cents.
1.) Don't feel bad if you have to cut back on arrangements and activities. I hate saying that because I love getting things done and hate the notion that I can't do something I should be able to do. I'm only in my twenties damnit!
2.) Take care of your self. Stay medicated, find medications that work. Do what you need to do to feel better or alleviate symptoms. For instance, a heat pad is my best friend. I do not miss doses of medication, particularly the nerve medication I take. I smoke cannabis regularly. I take a nap when needed as I don't get much sleep. I avoid a poor diet. Do what works for you. I let my employer know about my disease as it is a huge part of my life. So when I accidentally sleep in, or have to have a doctors appointment ASAP, she understands.
3.) Stay positive. Easier said than done, this I do know. Being negative doesn't help your current situation, and still make plans and set goals even if they have to change or be altered. Have good friends you can complain to, find a community around your illness. Make social connections that you can lean on when you need it. I was getting spinal injections, and I had one of my best friends taking me to the appointments.

Best of luck, and I do recommend you read The Pain Chronicles. That book really helped me reframe my outlook on pain, and how little understanding we have of chronic pain and illness.
posted by handbanana at 6:46 AM on June 2, 2012 [2 favorites]

You sound like you have a hard time being an advocate for yourself. Generally, women are socialised to put everyone else first; you are going to have to break that thought pattern and recognise how important you and your needs are. I know it is hard, but you are worth being first sometimes.

My husband has had Hasimoto's for a couple of decades (as well as several friends). As noted above, with proper medication and lifestyle changes you can still lead a pretty full life. My husband also has several comordid conditions that necessitate me being a caregiver. Not to excuse your husband, because he is clearly not meeting all your needs right now, but being a caregiver is HARD. You are obviously building up resentment, he is probably becoming resentful, and you aren't able to work as a team like that. It is clear that money is a big stressor, what options can you explore to relieve that stress? Here, disability is generous and encourages clients to go to school. If available to you it could help you quite a bit. Instead of relying soley on your husband for emotional/financial/logistical support (which is going to burn him out) you need to expand your support network and pull resources from anywhere you can. You are correct in evaluating support critically, do not rely on your mother and instead explore other support. This would actually be a great task to hand to a friend. Lay out the situation for them and have them look for all possible resources.

You should also speak honestly with your husband, acknowledge that he is carrying an unfair burden and thank him for that. Hopefully it will help dispell some of his resentment if you have the attitude "this sucks for both of us, thank you for everything you do".

Good luck, keep up the therapy and caring for your health. Right now you need to be gentle with yourself as you recognise your short and long term plans need to be altered. Allow yourself to grieve the changes, it IS unfair and it sucks, and you are going to get sick of hearing healthy people and their plithy saying and stereotypes (because invisible disabilities are generally ignored/forgotten/minimised) but you can still lead a full and satisfying life with your new normal.
posted by saucysault at 7:01 AM on June 2, 2012 [1 favorite]

Call it what it is handbanana, Ankylosing Spondylitis. That's my primary dx with RA adding to the story. Sjogrens plays with me. Pain sucks and it's a constant. Still, there is a life. Through the last 18 months, I've been able to explore parts of my self I had left behind when I entered the corporate world. It's actually been a positive aspect of these damned diseases. Now that the meds have gotten most of the really bad stuff under control, I'm left with what to do. I doubt I could ever return to my previous level of work. That's not necessarily a bad thing, but aside from knowing I won't be rid of this stuff, it's still difficult to let it go.

To the OP. There is no easy answer and your diseases will always be there. I sincerely hope they can be effectively managed. There definitely can be a positive future for you. It just might not be the one you planned for. For me, I'm back to doing creative work. My friends are referring to me as an artist. Strange, as I never thought that of myself before.

You need to accept, let go, listen and look forward.
posted by michswiss at 7:04 AM on June 2, 2012 [2 favorites]

Just wanted to say that it helps to remember that some of this is temporary. You will earn your BA. You will get a job that pays better. Your doctors will figure out what drugs work for you. In a talk Joe Biden gave recently, he said that after his wife and daughter died, he marked the really bad days on a calendar and felt a little better when he noticed they were moving farther apart. It gets better. Promise.
posted by kat518 at 7:23 AM on June 2, 2012 [1 favorite]

Nthing what smoke said, and also nthing to ask for pain medication as needed. I held out for a long time but boy was I glad I got some last fall.

As for your husband: you really need to bring him in on your diagnosis/treatment work and possibly get some joint counselling. This is a step I wish I had taken sometimes--and I am generally violently anti-counselling. I was married for several years to a healthy man who treated me with resentment because he apparently believed I was a slacker. It poisoned our marriage, and we are now divorced. I am happily married to someone with a (very different/unrelated) diagnosis of his own; we respect each other's illnesses and our expressed limits. Sometimes he resents that I can't do something; sometimes I resent that he can't do something; together we work it all out. The together part is key, though, and you deserve a partner who will pull in harness, who takes "in sickness and in health" seriously.
posted by immlass at 7:46 AM on June 2, 2012 [2 favorites]

Very good advice you're getting so far! Here's a little something of my own:

I was just diagnosed last August with MS (Sjörgen's twin, apparently). It has seriously been one of the most bittersweet periods of my life, because I have always prided myself on being quite independent. But, at the same time, it's given me a new appreciation for the things in life I wasn't noticing before. I've also been thinking more out of the box when it comes to how I do things, such as using a bread knife to pull down a cup from the very top shelf.

Your husband sounds like he's going through an almost textbook case of grief. The pet store incident is what sticks out to me most, as it's pretty much what a child would do when they're upset/uncomfortable with a situation. I echo the advice to get him more involved and let him see you on your bad days as well. Ask him for help with chores you can't do. Take him to the doctor with you. There is really no benefit to making yourself a martyr to spare him inconvenience.

Professionally, definitely come out with it to your boss and, if you're comfortable, your colleagues. I'm self-employed, so I had no boss to come out to. I was extremely cagey about it at the beginning, which hurt my reputation because I'd miss events or have to leave early thanks to my symptoms interfering. I honestly thought of packing it all in. What finally got me to change my mind was the incident when I told 2 of my fellow photographers. Their response? "No need to quit. It's just a matter of actually getting help going forward." So go ahead and come out with it. People will be more supportive than you think. And definitely ask for the accommodations at work. It's your right as well as the law.

One last thing, I would start the applications for SSD/SSI. A friend of mine gave me this advice because, according to his experience, it can take a long while. Get an attorney, if you can. If you can't, be prepared to have to appeal it a few times before you get any results. That one was a hard hurdle to get past for me, but I realized it needed to be done.

Feel free to me-mail me as well. I know how much having an ear to listen is worth in those painful moments. :-)
posted by arishaun at 9:40 AM on June 2, 2012 [1 favorite]

I have Lupus (SLE) and several collateral illnesses, including Sjogren's. I've awakened with the blurry eye, too; usually moisturizing eye drops help (takes more than the one or two drops per eye recommended on the package). The pain, fatigue, etc, will eventually tend to come and go and not be so chronic and unrelenting. Once the rheumy gets your meds adjusted properly (sometimes it takes time and some experimenting), you'll go through some relatively symptom-free periods. The secret is then to NOT overdo, get over-tired or stress yourself out just because you're feeling OK. Stress will bring on a flare sooner rather than later.

My Sjogren's has gotten worse in the last two years; I always keep a bottle of water in my purse as well as moisturizing eye drops and nasal spray. Heat is my enemy, too - luckily my husband is very sympathetic and puts up with running the bedroom AC even in November when he's bundling under blankets, but it took him some time to understand that I wasn't doing all this just to get attention or inconvenience him. Hopefully your husband will slowly come around as well and learn that the ol' "ounce of prevention" bit - spend more on electricity now, and my wife will sleep better and maybe feel well enough to do X with me tomorrow. And maybe spending a little extra now to help her rest will prevent larger medical bills in the future. That sort of thing.

As far as the spiraling expenses, I don't have a lot of great advice there. I was stuck in jobs I absolutely loathed for many years just because they provided very good Blue Cross coverage which I desperately needed. My main expense (after all the initial testing and such) was always the many meds I had to/still have to take. If you don't have prescription coverage, mention it to your rheumy and ask for any free samples he can give you of your Rx's.

Guilt will always be a part of having a chronic'll go out with husband or friends to a previously scheduled outing even though your body feels like it's been dipped in lead and your bones feel as brittle as glass because you hate to disappoint everybody again. You go in to work even though your fingers are swollen like little sausages and you can hardly bend them and it hurts to blink your eyes, but you can't afford to call in sick another day. Eventually you'll learn to listen to your body and "budget" that tiny reserve of strength when you're flaring - "so what if I don't get up and clean the house or go out to the concert we bought tickets for a month ago; I need to rest so that I can go to work (and that won't be no picnic, but at least I'll be there)."

Best of luck to you, feel free to MeMail me if you like. {{{hugs}}}
posted by Oriole Adams at 9:50 AM on June 2, 2012 [4 favorites]

1. If you have an urge to point out to a supervisor a basic unfairness of your working situation, don't ignore it, bring it up. When they suggest raises for people you supervise, you can jokingly say, "well shit, if they're getting paid more than me, for less hassle, I'll sign up for that job and you can promote one of them!" Smile big, show those grinding teeth.

2. Air Con is not negotiable. Tell your husband that he better love the dog a little less and you a little more. If he gives you grief, put him in the dog house and take the dog to bed with you in the cool bedroom.

3. Lighten your load where you can. Can you host pot-lucks instead of going places? Would that be easier for you?

4. Enlist all of your friends to be your support. When people love you, they want to help you. You'd want to know if your friends were in the same boat, no?

5. Make time for yourself. Whether it's naps, massage, or sitting under a tree, you need the time to rest and meditate.

6. Support groups. Why reinvent the wheel, find out how other people cope.

7. Improve your diet. My friend with an auto-immune disease finds that organic and unprocessed foods are best and really help with symptoms. Take up gardening to supply yourself and haunt farmer's markets. You may have to cut back on meats due to the expense, but it's worth it.

8. Get your husband on-board. Yes, he's still trying to process the issue, but you promised in sickness and in health, so now he's got to step up. In your next counseling session, tell him explicitly what you need. If he needs to take on household chores, say it. Bring up the air-con again. Have a list. He needs to work with you, otherwise he's hurting you.

Hang in there, you'll feel better once you get a handle on all of this.
posted by Ruthless Bunny at 11:10 AM on June 2, 2012 [2 favorites]

There's a lot of really great advice, but I wanted to chime in and suggest that you be a little more open with your husband about how you're doing day-to-day. I have a chronic pain issue that causes periods of near-constant, but low-level, pain, and I don't like mentioning lest it sound like complaining. However, I found that it helped my husband understand the difficulty and toll of living with chronic illness if I keep him more in the loop about how I'm doing. Telling your husband "today was a bad day in x respect" is not complaining; it's the same as saying "my boss was a dick today and it really took it out of me."
posted by mchorn at 1:42 PM on June 2, 2012 [2 favorites]

Best answer: "Is it going to get better? Worse?" Yes, both, but probably more "better" than "worse." Even if the symptoms get worse in some ways, which they may, your resources and coping skills will certainly get better, so the whole package will be easier to deal with. The stage that you're in now, of redefining everything in your life and figuring out the new rules, is incredibly difficult. It gets better. Some strategies that help:

Adjust your expectations; practice saying "no." It turns out that lots of the things we think we Have To Do are actually optional. Like, just as a random example, taking a shower every night. It's certainly a nice thing to do, and desirable, but not actually essential. Sometimes getting some extra rest is more important. Conserve your physical energy like a cheapskate hoards money.

Practice asking others for help.

Have a good doctor. Don't put up with any doctor who doesn't listen to you and take your concerns seriously. A supportive relationship with the right doctor can do a lot to strengthen your health, even with no other interventions. If possible, find a rheumatologist who sees a lot of patients with your particular conditions, so you can have the benefit of new research as it develops.

Listen to your body. Things like adjusting the a/c or heat to allow for reasonable comfort are very important. If spending an extra $10/month will let you be comfortable enough to get more restorative sleep, that's a great bargain.

Slow down. You may find that you can still do most of the things that are most important to you, but you have to do them at a slower pace. That's OK.

Make a habit of deeply appreciating the many small pleasures that are still available to you, just by virtue of being alive. Some sort of mindfulness meditation practice is enormously helpful in developing this habit. The book How to Be Sick by Toni Bernhard is a great resouce, and very comforting.
posted by Corvid at 4:51 PM on June 2, 2012 [4 favorites]

Hi. You're where I was about nine years ago, only I wasn't married.

Other people have given you really good advice, but one thing they haven't mentioned is that your husband's reaction to this situation is just not okay. It's okay for him to feel emotions. It's okay for him to be concerned about money.

But what it sounds like is that his bitterness over the situation has impacted your mental health greatly, which impacts your physical health greatly. Your home should be a place of rest; it sounds like it is a place of conflict. Pain eats away at the joy of life, but having a supportive partner can lessen that load. Your husband is adding to it.

I'm not saying DTMFA, but he sure needs to figure out what's important - your health or his comfort. It's not okay for him to behave in such an immature, childish way. Is there anyone in his life who can give him a reality check about how he's acting and how seriously ill you are?

I had to re-examine my marriage when I realised that some of my friends cared more about my mental and physical health than did my husband. It sounds like you've got a bunch of internet strangers who care more about you taking care of you than the person who should be most invested in you.

The only other thing I can say: Don't wait until they decide to give you pain meds. You shouldn't live in chronic excruciating pain. Meds will never take it all away, but they can make life livable again.

Hang in there. Please memail me if you want - as I said, I'm several years down that path, and I know how tough it is. I'm always happy to listen.
posted by guster4lovers at 4:55 PM on June 2, 2012 [3 favorites]

You have a lot of great advice posted Smoke has some wonderful tips.

You asked about Plaquenil. I'm on a maintenance dose now for a mysterious type of arthritis nobody can identify (seronegative) and I have fibromyalgia and blood cancer. So-I've been dealing with the stress of being a single parent of a disabled 35 year old, a horrific job that brought me to suicide and all of this freaking PAIN.

Stress is your enemy. Avoid it at all costs, and dammit find another job! Your husband appears to be in a state of denial. Men are 'fixers' and when they cannot help you with your pain, they tend to avoid the hard reality that he will be married to a woman he loves but cannot repair.

Don't be me-you can change your life before you get to this unimaginable place I'm in now. Never do anything you don't want to do, rest when you want to, eat chocolate every day and take long, bubbly baths just because you can.

FWIW-you may be suffering from fibromyalgia, and Cymbalta does help with your body's interpretation of pain, so that may become part of your cocktail. Ask the doctor. You CAN have multiple immune-like disorders like me and each can be treated and maintained.

What's working now: Thyroid meds, Spironolactone, Cymbalta, Zoloft, Plaquenil, Vicodin, Xanax and a generous helping of rest.

Take care of yourself. Oh-and my prayers go out to all of you ^^^ who suffer with this insidious nightmare.
posted by ~Sushma~ at 4:59 PM on June 2, 2012 [2 favorites]

You previously posted about your husband's depression. Depression makes people irritable. Also, he may be having his own reaction to the news of your illness. Hashimoto's should be well-controlled with thyroid supplements; they're cheap, effective, and low-side-effect. (IANAD, just quoting my doc) I take thyroid meds every day.

Sjögren's is a diagnosis that has changed quite a bit in recent years. Stay in close contact w/ the rheumatologist, and be clear about what you need - anti-depressant, pain med, whatever. You have a medical condition that has some disabling effects. Your employer (a university?) / school must make reasonable accommodations.

I love doing my job and school is really exciting, but when I have days that start at 8am and end at 9pm, and I still have to come home and make dinner, clean the dishes, walk the dog, do some laundry, take a shower, and remember to take my medicine all within a three hour time period so I can get to sleep by 11pm and wake up by 7am... I'm almost in tears writing this. I can't imagine this is sustainable. Time for your husband to make some reasonable accommodations. He can do the meals and cleaning for a bit. Make the meals simpler, if you can. Walking the dog is good exercise for you. Don't ever let him make you sleep on the couch again. You don't have energy to waste on that crap.

People who have autoimmune diseases or other such things: how do you survive life? What gets you through the day? Your goals - getting the degree, etc., are still your goals. How you get there may change, but you can still get there.

I have no one I can talk to about this. I love him, but my husband hasn't read any of the information I've given him on my autoimmune illnesses, and he's hard to talk to about this stuff. I think this is understandably stressful for him, too, and he's mostly in "avoid" mode right now. We're in therapy, so that's helping. Whether he can talk about it or not, he has to help you out.

I don't feel like it's appropriate to be sobbing/whining to my friends. They're friends; that's why you have them. They will want to help you. Let them.

I feel so alone in this and I have no idea what to do or how to cope or even how to survive day-to-day. Call the rheumatology office and find out about support groups. I have a friend with Sjögren's, and she has to scale back activities when it flares up, but is very active otherwise. Unlike you, she's cold all the time, and everybody deals with her house being pretty warm summer and winter.

Will I survive this? Is it going to get better? Worse? Is it worth it to make compromises and spend more on the things that will make me more comfortable? You'll figure this out as you go. Sjögren's is non-trivial, but can be treated and managed. Yes, you're going to survive and cope. Right now, you've gotten shocking news, and you're still reeling. You sound smart and resourceful, and that will help you a lot.

Is that just a psychological thing? Does it even matter?? This is not psychological weakness, or anything of the sort. You're dealing with a real issue, and anybody who can't rally around you is somebody you should spend less time and energy on. Your previous doc did you a disservice, so be thankful you now have a better doctor. Even though the news is really distressing, you now have a diagnosis, and ideally, a treatment plan. Give yourself some time to adapt, and deal with the challenges one by one.
posted by theora55 at 5:10 PM on June 2, 2012 [2 favorites]

I just read that post about your husband's "depression". Was that diagnosed, is he treating it with meds, therapy and lifestyle changes? Because you should not have been carrying all the burden you describe in both questions all this time. Your mother can't help so that means his family and friends need to step up then. You have to put yourself first; as you saw, being his caregiver made your own illness much worse without apparently solving any of his issues. If he does not have a diagnosis and/or treatment plan then you have to aggressively prioritise yourself now and not accept excuses from him; I'm sorry to read how hard things have been for a long time.
posted by saucysault at 8:30 PM on June 2, 2012

It sounds as though it would be worth addressing the responsibilities/compensation issue with your supervisor. I'm a little confused by your reference to "management of undergrad employees" when you're working on your BA — doesn't that make you an undergrad too? But that's not really relevant, I think. If you're working in a supervisory position to them, it makes sense (to me, at least) that your position should be paid more. Otherwise, Ruthless Bunny's advice to smile broadly and cheerfully threaten to quit for the higher-paid/lower-responsibility position sounds good to me.
posted by Lexica at 9:26 PM on June 2, 2012

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