How to cope with not getting answers?
January 10, 2018 11:24 AM   Subscribe

Not a medical question, just to say up front. I'm asking: how do you cope with having symptoms that limit your mobility and cause pain, when you know for a fact that no one will try to figure it out, so the cause likely won't be found, and you have no idea what to expect for the future?

The symptoms are moderate and not life-threatening, they just affect day to day life. They diminish if I don't walk around too much, which depresses me.

I think I could accept things / cope better if there were a diagnosis (even if there wasn't a cure) and I knew what to expect. It's the limbo and no promise of an answer (rather, I am promised *no* answer) that get to me. The lack of control. The idea that maybe this will be permanent (but no one can say for certain).

I have to find some way to accept and live with this, looking for help with that.
posted by cotton dress sock to Human Relations (16 answers total) 8 users marked this as a favorite
It sounds like what you are going through is super tough.

Are their activities you enjoy? Maybe try to focus on doing what you like.

Also, I am sure you’ve probably done the usual second opinion and such, but maybe look at your annual check up as a good time to reconnect with your providers and see if there are any new tests or theories that you could try. So it wouldn’t be a lifetime of wondering, just making it to the next check in.

When I was pregnant and really sick the best thing that I did for myself was to really let go of my own expectations and focus on the important stuff. We ate a lot of raw food because cooking smells bothered me. And the house didn’t get cleaned as much because it was more important to me to use what energy I had to play with my toddler.

Forgive yourself for not being a superhuman who can do everything.
posted by MadMadam at 11:34 AM on January 10, 2018 [2 favorites]

I'm in that "no one will try to figure it out" boat right now for a different moderate and not life-threatening medical situation. I dealt with that frustration for years and then I realized the only thing I could change was my own expectations. I just had to go out and do my best, where "my best" was a different value than I was used to, which is totally ok.
posted by Ruki at 11:36 AM on January 10, 2018 [4 favorites]

Keep pushing for a diagnosis. Go to specialists, join patient groups, research yourself. You can figure this out!
posted by fshgrl at 11:58 AM on January 10, 2018 [1 favorite]

This was me for the past few years! I ended up with lingering joint pain after getting and recovering from dengue fever. My joints would ache a few days before every cold I got. They also ached really badly after exercising (which was horrifying to me because I've always been so active). When I say ache, I mean it felt like my hips and lower body joints could be breaking from the inside out sometimes. The first few steps I took in the mornings were especially excruciating.

Every time I brought this up with a doctor, they just brushed it off as, you've recovered from dengue fever! What did you expect? They never gave me any sort of direct answer and told me it'll get better in a few months. It actually took about 3 years before the joint pains went away.

So, because I couldn't do much of what I liked and was getting pretty bummed out, I went digging through the scientific and clinical literature myself. I found both an article that linked dengue fever to autoimmune issues (especially in women) and a doctor who was willing to run some autoimmune panels after I showed her the article. Turns out my panels came back positive as having autoimmune weirdness going on. I managed to get at least an answer of why I was hurting, even if there was nothing to be done about it. And it really helped.

Other things I did to cope....I picked up some new, non-active hobbies. I learned how to crochet and make little amigurumi style stuffed animals (and crocheted actual pussies instead of pussy hats for my friends when we went to the Women's March). I also went back to school for pre-requisite classes and started applying to grad school.

To be honest, sometimes I just went, fuck it, I'm going to do what I like to do and built in some extra days for recovery afterwards.

Good luck! This whole situation does suck, but it can be manageable!
posted by astapasta24 at 12:13 PM on January 10, 2018 [4 favorites]

I’m in a very similar situation, and being told to keep trying to get effective medical help after trying dozens of doctors dozens of times is really demoralizing. I’m still trying to learn how to handle it myself, but what I’m doing is:

Finding things that I can still enjoy and doing them a LOT

Letting go of prior identities that are no longer possible for me; ideally I’d develop some new ones too but I’m not there yet!

Dropping expectations for myself if they’re not really important

Developing set responses for people who think I should be doing something else, so I can just give it and move on rather than waste time and headspace composing something to justify myself
posted by metasarah at 12:16 PM on January 10, 2018 [2 favorites]

I was misdiagnosed by four different doctors (varying, kind of vague symptoms but getting increasingly terrible over time). I finally ponied up $500 for a visit with a specialist I'd heard on a podcast. All the while I was driving there, I thought I was crazy for doing this when all of the doctors I'd seen were from a famous, highly regarded medical center and he had a boutique practice. He figured out to test my hemoglobin (he noticed I was pale - no one else had), then called me at home to send me to the ER because my anemia was so severe. After a few days in the hospital, I was diagnosed with cancer and have responded well to treatment.
It's very, very difficult to keep going in the face of medical frustration, but I'd strongly suggest that you keep trying. I am alive because I didn't believe what the first four doctors told me. I'm not at all saying that you have something this serious - I'm just saying that individual doctors sometimes cannot figure things out - that doesn't mean that there isn't an answer.
posted by FencingGal at 12:17 PM on January 10, 2018 [9 favorites]

I just had to go out and do my best, where "my best" was a different value than I was used to, which is totally ok.

This sounds simple but I think it's really important. I have some not-yet-tracked-down seasonal mood/energy issues, and it's been really healthy for me to realize that I just don't operate well at night this time of year. So nightly tasks around the house, for example, that I'd "normally" do immediately before bed are now get them done as you walk in the door from work chores, or (more frequently) next morning chores.

Is leaving dishes and bottles in the sink overnight the best? Maybe not, and the smell of formula probably reflects that. Is my life better for leaving them until the sun comes back? Absolutely.

So you mention limiting your walking around. Can you try "budgeting" your physical activity? Maybe you know that you can do an hour of up and about time every 6 hours, for example. It's not fun to have to prioritize everything going on in the day and to have to fit it in to that couple of hours, but I find it so freeing to fight the battle once - "here's what I have the spoons to do" - instead of daily getting stressed out by realizing I ran out of energy 5 minutes ago and still have stuff to do.
posted by Nonsteroidal Anti-Inflammatory Drug at 12:19 PM on January 10, 2018 [3 favorites]

It’s really really frustrating.

But two things:
First, a diagnosis isn’t as much of a relief as you think. If it’s something people can’t see, they don’t. You will still be dismissed and ignored. People will think you’re exaggerating and fine and whatever.

It can be almost worse. So that’s for the emotional part of it. The frustration does not go away with a title.

Secondly, you absolutely can find a doctor who will dig deeper. They are out there!

You don’t say what the specific problems are, but you mention pain. It seems like a lot of these questions always end up at a rheumatologist. Lots of things don’t show up in blood tests. But a good rheumy won’t stop there. (Or orthopedist, neurologist ...)

I have lupus and have been seeing rheumatologists for 15 years. I’ve probably seen 12, if not more. And maybe 75 specialists over the years.

Now I get a feeling with new docs - if they don’t seem to pay attention to what I’m saying, I walk. No second chance. No nothing. Onto the next.

And write down as much as you can. Days that it’s worse. New symptoms, etc. I have a daily calendar - I don’t write everyday, but the big stuff.

It gives a good doctor a chance to look for patterns. Weather or periods or chocolate for migraines, for example. Apples and belly pain. Persistently cold toes and fingers. It also lets them know you’re serious.

I go to every doctor appointment with a lost. I don’t leave until the list is done.

It’s taken years to have a great team to watch over me. And a lot of work on my end. But it’s absolutely possible, even when it seems like you can’t deal with it one more day (or new doctor).

But it’s just frustrating and scary. No question. And we shouldn’t have to go through it. (But I’ve been on disability for 16 years with lupus - and not a single person in my family takes it seriously. I look fine. Ditto plenty of first-time doctors. Diseases people can’t see just don’t exist. It’s not until I started getting serious and chronic migraines that my family is at all considerate.)
posted by crankyrogalsky at 12:27 PM on January 10, 2018 [2 favorites]

Hey everyone, thanks so much for your answers. Much sympathy for what you've all been through, too...

I don't live in the US, and though I've been dogged (and patient), it seems like I've pretty much run up against the practical and technical limits of my medical system. So I'm trying to focus on how to live with this unknown and probably unknowable & unpredictable (where I live) thing that blocks my actions and happiness in particular (though unpredictable) ways. Great tips on this so far, thank you so much.
posted by cotton dress sock at 12:57 PM on January 10, 2018

I read this somewhere and it just kind of clicked... I never dreamed that I would wake up sick one day and never recover. Or something along those lines. I mean it seems impossible that could ever be the case, right? because we're always pushed to find the answer, to understand what's wrong so we can fix it, or at least make it better.

But here we are. Pain a constant companion whether we want it or not, and we keep asking for answers because we think, "If I just know what's wrong, maybe I can fix it, or at least make it better."

But doctors are human too, and there's so much about the human body and mind that they still don't understand. Hell, they don't even know why Tylenol works. They just know it does -- most of the time. And once I realized that even the specialists are shooting in the dark some of the frustration I felt faded away. I came to understand that lot of times felt brushed off was because the doctors just didn't want to admit that they had no idea what was going on with me. And I had to accept that I'm broken. Maybe I'll mend, maybe I won't. Probably not, but I can hope, right?

The thing is, once I accepted that I couldn't do everything I was to be able to do before the day I woke up sick, it made life much easier for me. I don't want to say, "Lower your expectations" more like "Go easier on yourself." If you broke your leg, you wouldn't walk on it until it healed. Even without a diagnosis, you still have symptoms, work with those instead.
posted by patheral at 1:03 PM on January 10, 2018 [6 favorites]

Limbo is the worst.

I'm currently going through a similar issue. And one thing that has really helped is acknowledging that it sucks. I currently have a great therapist who I trust to see me. He validates my experience. He doesn't question whether I'm exaggerating my symptoms or being lazy and not trying enough. He doesn't tell me my catastrophic fears of dying from medical neglect are unlikely.

It's possible he would in a different scenario. That's part of why I trust him. But processing that grief has helped me make room for myself. It helps reduce the panic. I'm currently using that peace to be a bit more tenacious in getting a concrete diagnosis. Maybe I'll actually get answers or a cure. But just inserting myself into the medical community, maybe I can help push medical knowledge further. Be willing to try more experimental treatments based on nascent hypothesis about how systems affect each other. So the next generation is better understood.
posted by politikitty at 1:38 PM on January 10, 2018 [1 favorite]

I think trying to understand your own limits and live inside of them helps a lot. You may need to figure out, for instance, more sedentary hobbies. But the more you know about how much you can do without pain and what you need to avoid entirely, the better. I've accepted that doctors don't really know why I get so tired or how to fix it. But I know what I can do on high energy days and low and I can work with that. I have things that bring me joy and things which are necessary that can only get done on high energy days, so that's when they happen. I have a lot of things that bring me joy on low energy days too. So find out what you can and can't do, and find your joys for your low days.
posted by Margalo Epps at 1:57 PM on January 10, 2018 [1 favorite]

This is going to sound shitty - but you have to assume this is your life now. And it's not easy! But you can start to make a plan. What can you do? What can't you do? What helps? What doesn't? Etc. (The spoon theory may be helpful. It's a way to plan out your energy limitations.)

As you go from there, you can still seek help. But the other shitty news is you have to push HARD for answers. My best advice is find a good GP and KEEP advocating for yourself and pushing for answers. Double check all your test results. Do your own research. Make sure they know how much it is affecting your life.

As someone how found most answers... Sometimes the answers lead to better treatments, other times it was literally "You have this and we hope it goes away but here's some meds for the symptoms."

So overall, try to focus on treating the SYMPTOMS you have because even if you find an answer, that still may be the treatment. And at least in the meantime you can try to feel better by managing symptoms even if you don't fully know the answer yet - and sometimes learning what treatments help symptoms can lead to a diagnosis.

I'm an experienced Sick Person.™ A big thing has been assuming that this is my life, and if answers and improvement happened then I can go from there. Feel free to connect with me. I'm working on surrounding myself with similar people, especially on Instagram or here.
posted by Crystalinne at 2:05 PM on January 10, 2018 [1 favorite]

Meditation. Many teachers have helpful methods for separating pain from suffering. My favorite is Adyashanti but could recommend others if you don't feel his vibe.
posted by namesarehard at 2:10 PM on January 10, 2018 [1 favorite]

If you have a scrappy medical system I'd treat myself. Acquire some anti inflammation medication and some steroids or other meds that reduce inflammation online and do a short trial of each and see which works. Then go back to your doctor or an online doc and work out a plan to medicate the symptoms. Avoid painkillers as much as possible. Maybe try cbd oil if you can get it or similar. DMSO is a little sketchy but people have used it for decades to relieve pain and inflammation.

If you suspect it's autoimmune related maybe acquire some hookworms and infect yourself. Supposedly works well for a lot of conditions.

Drink nettle tea, eat healthy, get enough sun and sleep an take a multi vitamin each day. See what else you can find online that people with similar symptoms are doing.

Basically do what you can to ameliorate the effects on your day to day life.
posted by fshgrl at 3:27 PM on January 10, 2018 [1 favorite]

Sorry to hear Cotton, feeling helpless is the worst. I'm struggling with similar issues around health and well-being right now, and the doctor has pretty much said all the wrong things from the first visit. I'm in a diagnosis by forfeit - and the treatment is medication in perpetuity and diminished physical capacity. Sitting meditation hasn't ever really worked for me, I tend to prefer active meditation practices. You might be the same - hearing I couldn't walk anymore would be a lot of take in.

I have a bit of a goal to get more physical this month, but I'm not dealing with the mobility issues you are, more energetic. In my recent MBA program, I tangentially worked with the entrepreneur who invented this device. I don't know the nature of your limitations, but might at least give you a physical outlet for feeling stress or stucked-ness. Or maybe there's other mobility devices that let you get out in ways that don't create pain. Good luck!
posted by SoundInhabitant at 11:31 PM on January 10, 2018 [1 favorite]

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