My Hidden Life: Stories of Illness & Disability

I'm a graduate student (in math) with chronic pain from Central Sensitization Syndrome (which is closely related to fibromyalgia). This blog is a mix of my personal experiences with illness and treatment, rants on being sick in a prejudiced world, practical tips, and scientific information on my disease and related conditions.

[chronicallypainful]

My brother's fiancé was just diagnosed with breast cancer, and I am jealous of how much support she and my brother are getting from family. There, I said it. I'm not proud of it. But suppressing emotions is generally not healthy. So let's talk about it.

Just to set the stage here: the diagnosis is serious but not dire. She's looking at at least six months of chemotherapy plus surgery. There are also very real financial stresses in this situation. It is legitimately crappy.

When my mom called to let me know, she said something to the effect of "they're both going to need our help and support." Yeah, no kidding. I cannot argue with that, and I will offer what support I can (probably mostly phone calls and care packages). That statement, though, also hit a really sore spot for me.

I think there are several layers as to why that bothered me.

1. As anyone reading this already knows, chronic illnesses don't receive the same level of societal recognition or support as acute illnesses or cancer diagnoses.

2. As I described in a post a couple weeks ago, I have been dealing with antidepressant induced health problems for more than seven months now. At times my symptoms have been quite severe, to the point where I took a full three weeks of medical leave followed by about a month of only working part time. I've felt alone and I've had trouble getting support throughout this time. When I spoke with my mom about my brother's fiancé's cancer diagnosis, my mom was already thinking about taking her to chemotherapy appointments, cooking meals, and helping with housework. Throughout the past seven months, my mom has not taken me to any medical appointments, cooked any of my meals, or helped me with housework. Now, there are a couple really good reasons for that, including the fact that she would have to drive four hours to reach me, while it only takes about an hour and a half for her to get to my brother. The other factor that has made it really hard for me to get support is the "just another couple weeks" phenomenon. Throughout the process, my doctor kept telling me that my symptoms would improve in a week or two. This made it really hard for me to know that I needed to reach out for support or coordinate logistics so that I could have more support (e.g. I would have preferred to spend my three weeks of medical leave staying with my parents instead of living by myself with no ability to drive in suburban America. But nobody thought it was going to be a whole three weeks when I started needing to take sick time. And it wouldn't make sense to travel to stay with them if it was only going to be a few days, right?) Even though I can look at those reasons why I have had trouble accessing support and acknowledge that they are valid reasons outside of either my or my mom's control, it's still hurts to see how readily and quickly she is jumping to provide support to my brother and his fiancé, when I have not enjoyed that same level of support in spite of my own significant health challenges.

3. My antidepressant related health issues are not over, and I still would like to have more support that I'm getting. While I am no longer incapacitated to nearly the same extent that I was a few months ago, I am still experiencing daily dizziness, excessive crying, and elevated pain levels. (And, yes, I have now been entirely off of the offending medications for 4 1/2 months. And yes I am still having symptoms.) I'm also essentially attempting to rehabilitate myself after an extended illness, and I'm doing that while working full-time and trying to manage three chronic illnesses, including the now-untreated anxiety disorder which was the thing I sought treatment for in the first place. It's exhausting. And I'm also exhausted by the fact that I've been dealing with these additional health challenges for more than seven months now, and I have done that mostly on my own.

[tofu-bento-box]

doctors: if you’ve been on a medication for a while and you no longer have symptoms, do NOT assume that you’re cured and stop taking it!! the underlying condition is still there!!

also doctors: hm you’ve been on this medication for a while and it’s really helping you. let’s reduce your dose and see if you still actually need it

[chronicallypainful]

This is all about control! (And also some safety, but mostly control)

In the first case, what's really meant is "Don't stop taking your meds without permission from your doctor." Because clearly, you aren't knowledgeable enough to make your own choices about your own body, right? In the second case: "I, the doctor with the fancy degree, don't think you should be taking that drug. So, let's see what happens if we reduce the dose." Again, it's all about control and paternalism. The implicit message is that the doctor knows best.

[chronicallypainful]

So many doctors never learned to say "I don't know"

Instead they say:

Some version of "It's not real": "It's all in your head," "Are you sure that's what's actually happening?", "Maybe you're just looking for attention?"

Or, some version of "It's your fault": "You just need to lose some weight/be more active/eat better/etc.", "It's just because you're stressed out."

In summary, doctors whose egos can't handle not knowing everything either invalidate what you're feeling in your own body or else they blame you for it. And the results can be traumatizing. "I don't know" should be a part of everyone's vocabulary!

[chronicallypainful]

My recent antidepressant adventures

Before I go any further, let me be really clear about one thing. This is my personal experience with anti-depressants. It is not a typical experience at all. Antidepressants can be life-changing (in a positive way) and even life-saving for some people. I'm going to express a lot of frustration with what these drugs did to me, how they were studied, and how I was informed about their possible risks. This is not intended to deter anyone else from taking these medications if it makes sense after a conversation with your doctor about the risks and benefits for you.

Some history. I actually started taking my first antidepressant before my pain disorder was even diagnosed. My GP hadn't been able to give me a proper diagnosis for my pain but suggested that Cymbalta might still help. It did help somewhat, and I stayed on it for several years. A couple years later, after I've gotten a proper diagnosis, the rheumatologist who diagnosed me suggested trying Savella instead of Cymbalta for my pain. I had significant headaches and dizziness while trying to transition from one drug to another, and my doctor and I made the decision to discontinue that transition and return to Cymbalta.

Fast forward about four years and I'm a graduate student. My anxiety has gotten really bad and started to seriously interfere with my studies, which is finally enough to motivate me to see a psychiatrist. After trying a few other things, this doctor concluded that I was having an unusual side effect of SNRI's where they can actually make anxiety worse. So he had me taper to zoloft, an SSRI. The side effects were again terrible. For about two weeks I laid on the floor of my apartment and tried not to move because any movement made me extremely dizzy. I picked the floor rather than my bed because the stability of the floor minimized my dizziness. Even shifting position in bed made me feel like I was spinning around or swinging in a hammock. Within a couple days of reducing my Zoloft, though, my anxiety improved considerably. That improvement and anxiety gave me the motivation to wait it out. It was a couple months before I was fully back to normal, but the worst of the dizziness and other symptoms improved within three weeks.

And now we are reaching close to the present. I've been struggling with anxiety quite a bit for the past several years, though I have been quite successful at blaming it on external (and hopefully temporary) factors: COVID-19, moving to a new city, starting a new job, having difficulty obtaining disability accommodations at that job. Well, this past January, I made the decision, together with my therapist, that I should see a specialist about medication management and hopefully see if a change in medication could help me. To say that that has backfired would be a massive understatement.

I found a physicians assistant in psychiatry who I genuinely do like. I had my first appointment with her in late January. I shared with her my prior experiences changing antidepressant medication and how many side effects I've had and how severe those side effects have been. She promised me that we would use a very slow taper, and also assured me that she would support me with FMLA paperwork if I needed to take time off of work due to side effects. She recommended that I try lexapro, wrote me a prescription and a tapering schedule, and sent me on my way.

Somehow, this time was worse. Within two days of starting the taper, I was dizzy, had frequent headaches, couldn't sleep through the night, had frequent mood swings, and was having alternating diarrhea and constipation. Based on my experience switching from Cymbalta to Zoloft, I assumed these symptoms should resolve within three or four weeks. They did not.

I spoke with my provider at the three week mark. She told me that she was surprised I was having such severe side effects but that she thought they would go away once I was stable on a constant dose of Lexapro.

So I stuck it out. I had to work from home because I couldn't safely drive. I couldn't take my dog on walks because I was scared he might pull me off balance leading to me falling. Instead of taking my dog on walks, I took my hiking sticks for extra balance. My exercise was limited to just walking because, again, I couldn't drive. I struggled with social isolation.

After a five week taper, I was on a constant dose of Lexapro. I was still having the same set of side effects. There were day to day variations in severity but no trend towards improvement. I spoke with my doctor again and she encouraged me to give Lexapro a full four weeks for everything to stabilize. I did. It didn't get better.

At this point, I've been dealing with substantial additional impairment for a full two months. I haven't driven in two months. My ability to exercise and manage my pain disorder has been significantly limited. I have been socially isolated, making my anxiety worse. I want to be done and this is what I tell my provider. She agrees to a rapid two week taper off of Lexapro. Unfortunately, eliminating the symptoms would not be so easy.

During the two week taper, my symptoms are very similar to what they have been. I'm still dizzy. I'm still having G.I. symptoms. I'm still having mood swings.

I took my last dose of Lexapro on April 8. A couple days later, the symptoms got much worse. My dizziness got substantially more severe. I no longer felt safe taking a walk, even with my walking sticks. I felt like I had a fever, complete with the chills and the alternating sensations of feeling hot and cold. My sleep is a total mess, and I'm waking up more than a dozen times each night, eventually lying in bed tossing and turning for hours. I'm crying uncontrollably about everything and nothing. I started experiencing a lot of muscle tightness especially in my shoulders and upper back, and this leads to severe pain.

Up to this point, I had been continuing to work full-time from home. After this new wave of even more intense withdrawal symptoms, even I had to admit that I couldn't do it anymore. I've reached out to HR and medical provider and coordinated medical leave. I ended up being fully off work for three weeks, and then I worked part time for another month after that.

Through the months of April and May, most of my symptoms did resolve. By the time I reached June, I was only left with the muscle tightness (And accompanying pain) and the dizziness. And it's honestly hard to tell where the line is between medication withdrawal causing tight muscles and fibromyalgia simply perpetuating tight muscles. But the dizziness has been extremely stubborn. It has slowly improved since mid April, but I am still dizzy as I sit here today writing this post in late July.

As I sit here today, it has been 3 1/2 months since my last dose of an antidepressant. And yet I am still dizzy. As I sit here today, I don't feel it is safe for me to drive after about 2 PM (the severity of my dizziness is related to time of day). As I sit here today, I am still socially isolated by my inability to drive in the evenings. As I sit here today, my pain management options are limited, again by my inability to drive. As I sit here today, I don't have a good explanation for why I am still dizzy 3 1/2 months after discontinuing my antidepressant.

At risk of stating the obvious, this is not what I signed up for. I knew I had had bad reactions to changing antidepressant medications in the past. I knew that I might have severe symptoms for several weeks. But I never dreamed that it would be several months. And I never guessed that those several months were turning into half a year.

I am angry, pissed off, livid. I'm also scared. While my dizziness does seem to still be very slowly improving, I'm scared that it won't resolve. I'm scared that it will become one more chronic issue that I have to manage. I'm scared this is another manifestation of central sensitization and that, now that I've had the sensitizing experience, I won't ever be able to fully recover due to my broken nervous system. A lot of that is probably my anxiety disorder talking. But my brain isn't pulling these things from thin air. The last time I had a medical issue which lasted multiple months and for which I could not get a clear explanation doing those many months, well, I ended up with my chronic pain disorder.

[chronicallypainful]

One more annoying thing about chronic pain / chronic illness

One of the many challenges of chronic illness is that it (often) robs you of your coping strategies. Within the first few years of developing my chronic pain disorder, I lost the ability to play music, write/journal, knit, play video games, and even browse the internet without severe pain. More than half of my tools for coping with challenging situations and emotions were lost in less than 2 years. It really, really sucked, and I did not have the cognitive and emotional tools at the time to deal with that in even a semi-healthy way. (I was also 16 years old.)

Since then, I have found ways to use assistive technology and other strategies to reclaim some of these activities. I've also explored other avenues for creative expression. And I've added carefully-selected exercise and meditation to my coping toolbox. I now find myself in a similar situation again. Due to current health challenges (which I will write about later), I'm very limited in my ability to drive. Since I live in "car hell" (AKA America outside of the biggest cities), this is really limiting. I'm now finding that I can't (easily) take my dog to the park, go to the gym, or meet up with friends. I'm been through this before (and this time the underlying heath issue will hopefully be temporary). I know I can make it through. But it still really sucks to have coping strategies removed when you most need them.

[chronicallypainful]

Any shower chain recommendations?

Does anyone have recommendations for a good shower chair / shower stool?

I’m moving in about a month for my new job, and my new apartment isn’t ADA accessible.  That’s fine, as the only feature of my current ADA accessible apartment that I actually use is the built-in shower chair. (And the electric door opener, but that’s only necessary because the door is super heavy.)   But, that does mean I need to buy a shower chair before I move.

Ideally, I’d like something easy to clean (but I don’t know if that exists!).  I don’t need a back; just a bench or stool works for me.  And of course I don’t want anything that has to be installed; it needs to just sit in the shower.

If you have recommendations, I’d really appreciate them!  Thanks!

[chronicallypainful]

I have a job!

I just accepted a job for post-graduation.  I start in August. 

I’m not going to share details, because I deliberately don’t use my real name here.  

But, it’s a good, professional job using my math skills.  

I’ll have a salary and good benefits that should make it way easier to take care of myself.  And I’ve already talked to HR about disability accommodations, and I think part should be good, too.

I’ll be moving, which is of course stressful.  But I’ll only be a few hours away from my brother, and about 4 hours from my parents. And I already know a couple people at the company.

Now I just have to graduate. :-)

[chronicallypainful]

[Image description: Hand lettered text “We are enough, just as we are.” with stick figures using various mobility aids.]

Some more art I’ve been working on. :-)

Poster available on Zazzle if you’re interested: https://www.zazzle.com/we_are_enough_just_as_we_are_disability_poster-228016728378850955

PS. If you want it in a different color, I can do that easily.  I’ve been learning how to digitize hand drawn work, and it’s pretty cool.

[chronicallypainful]

[Image Description: Model wear a t-shirt.  The shirt says “Proud disabled Yogi.” There is a stick figure lying on a yoga mat with a cane next to the stick figure.]

I created this design for me, honestly.  

Yoga is great for me, but I sometimes feel excluded because of my disability.

I also learned how to digitize my art as vector graphics, so this is much higher-quality than the art I’ve posted to Zazzle in the past.  Which was fun to learn.  I’ll be making more....

As I’ve said before, I post these designs because people sometimes request to buy them.  That’s awesome that you guys like my work so much!  But I’m okay financially, so no pressure from me to buy anything!

[chronicallypainful]

So frustrated with my professor.

I really struggle to write. It’s quite painful, and I have to limit how much writing I do in order to avoid making my pain (temporarily) worse. There are consequences if I overdo it.

Now, this professor, he seems to worship the idea of writing out computations longhand. He assigned us problems that he intended for us to solve by repeatedly applying inequalities and simplifying the algebra, in some cases requiring more than a page of computations per problem. I consulted the literature, found a source that discussed some alternate approaches, and solved one of the problems using those techniques. When discussing my solution with this professor during office hours today, he told me that that wasn’t the solution he intended. He showed me his intended solution, and then started talking about how great this subject was because he could prove all sorts of results using just a couple of key inequalities and a bunch of algebra. He talked for a couple of minutes about how he found that fact comforting, and isn’t it great?

I sat there trying not to scream at him. He knows I have a disability. He knows I struggle with handwriting. We have talked about it. Multiple times. I was wearing a wrist brace. While he was extolling the virtues of hand computation.

I did eventually point out that, no, it’s not great, because I can’t do that. I can’t just bash at the algebra until I get the inequality I want. No, that’s not an option for me.

And what does he say? “Oops.” That’s it. No apology. Just “oops.”

Needless to say, I got out of his office as soon as I could manage.

This sort of thing hurts. It hurts because I do want to be able to write out all the math. It hurts because the sort of obliviousness he showed is one of the reasons why we don’t have good assistive technology for doing mathematics. It hurts because I still sometimes struggle with believing that I can be a successful mathematician without handwriting.

To be completely fair, mainly he was just oblivious, not malicious. But it’s been a long week, and I just really didn’t have the patience to deal with his behavior today.

[chronicallypainful]

So, this prof just got a teaching award......

I am so ready to graduate and get out of this school.

[chronicallypainful]

The truth about why I haven't been around much lately

Okay, there are multiple parts of this truth. I'm getting close to graduating with my PhD, and that is just a lot of work. And I'm trying to search for a job. And all while dealing with chronic pain and the miscellaneous collection of other symptoms I live with every day.

But those are all just reasons that I'm busy. The reason I haven't chosen to spend my (granted, limited) free time on tumblr is this: I really like and benefit from yoga.

Now, let's be clear, yoga has not and will not cure me. I am still disabled; I am still in pain.

Let's also be clear that a lot of yoga teaching and discussion in culture is ableist.

And let's also be clear that I don't like being asked "have you tried yoga?" any more than anyone else does.

(Though, I now do have a scripted answer: "As a matter of fact, I practice yoga every day. And you should be grateful that I practice, because that yoga practice is currently giving me the calm and self-control to not smack you with my cane.")

And let me be superduper clear that yoga is not the right practice for everyone, and that there are lots of different styles of yoga and that what works/doesn't work for one person is going to be unique to that person.

To be honest, I'm a little scared to post this. I don't think there's anything wrong with my experience or with my discussing of it, but I do know how often "but have you tried yoga?" becomes a meme around here.

So, yeah, that's why you haven't heard much from you lately. Because, for the past about 2 years, I've been practicing yoga every day and finding it really helpful. And I'm honestly not sure if that experience is one that will be welcomed in this community.

[petewave]

[chronicallypainful]

Recommendations for novels with good disability representation

Does anyone have any recommendations for novels with good disability representation?

Preferably adult characters, preferably not too much romance, and please nothing with graphic sexuality.

Thanks!

[chronicallypainful]

So, I'm currently sitting in a wheelchair at the airport at my gate more than an hour before my flight leaves. (because I followed the airline's advice and got here early.) I actually prefer to think of these wheelchairs as adult strollers because I have no independent ability to move. The wheels lock except when someone is holding the handle.

I'm bored, so I read the instructions / warnings on the wheelchair. And it explicitly says not to leave the passenger unattended in the chair! The stated reason is because the passenger can't move the chair and would be in danger in an emergency.

Now, I'm not worried about emergencies; I have my crutches and can walk if needed.

But I am really annoyed that I can't use the restroom without getting help. (And there is no gate agent here yet to even ask!)

Honestly, would it kill them to use a style of wheelchair that I could push to the restroom myself?

[chronicallypainful]

I should add that I don't just use my crutches to walk to the restroom because of my luggage. Carrying my suitcase, CPAP bag, fanny pack, and using crutches would be a quite challenging proposition.

[chronicallypainful]

So, I'm currently sitting in a wheelchair at the airport at my gate more than an hour before my flight leaves. (because I followed the airline's advice and got here early.) I actually prefer to think of these wheelchairs as adult strollers because I have no independent ability to move. The wheels lock except when someone is holding the handle.

I'm bored, so I read the instructions / warnings on the wheelchair. And it explicitly says not to leave the passenger unattended in the chair! The stated reason is because the passenger can't move the chair and would be in danger in an emergency.

Now, I'm not worried about emergencies; I have my crutches and can walk if needed.

But I am really annoyed that I can't use the restroom without getting help. (And there is no gate agent here yet to even ask!)

Honestly, would it kill them to use a style of wheelchair that I could push to the restroom myself?

[chronicallypainful]

I've noticed a pattern, and I really don't like it.

I get through a period of increased anxiety, and pain just smacks me in the face. I know it's because I've been holding tension in my muscles because of anxiety. Then my chronic pain amplifies that soreness into serious pain. And now that my brain is a little calmer it has time to think about the pain.

I know why it happens, but it still sucks!

[chronicallypainful]

Disability is taking the long route because the short route has stairs and no one could be bothered to build a ramp. And then it's somehow your fault when you're late.

Metaphorically speaking. (And sometimes literally, too.)