A Conversation With Keri: How fibromyalgia Changed Her Perspective On Blindness

During my first year of university, I was afflicted with brutal and frequent migraines. Since I already suffered from chronic tension pain, this new development was a devastating blow. I began to experience stroke-like symptoms; I missed classes and struggled to meet deadlines; I shuddered to think what might be wrong; and I refused to reach out.
While I have been able to detect the source of the migraines and manage them well now, I’ve never forgotten how cripplingly disabled I became while under their power. Blindness had always made life challenging, but I’d never been so completely incapassitated by broken eyes. Invisible disability, which so many people fail to understand, taught me a great deal about myself and others. I learned never to underestimate pain, or assume I knew every battle a person might be facing.
Keri suffers from chronic pain–pain that can be far more disabling than any form of blindness, and she’s graciously agreed to share her story with us.


Q: Can you tell us a bit about your life before chronic pain began to affect you?
A: It was nearing the end of September back in 2014, and my life was pretty typical. I was in my second semester of college, I had a great boyfriend, and life was good. I was happier than I had been in a long time, even though I had lost my sister just two months before. I was hopeful about my college studies, and ready for Christmas break like any other typical college student.

Q: When did you first realize something was terribly wrong?
A: It was a Wednesday night, and I was relaxing on my loveseat, and gaming after a typical day of classes. I was happy to be free for a little while from boring things like Experimental Psychology, and to be doing something I love: gaming. Suddenly the calves of both of my legs started hurting. I have a high pain tolerance, but I was almost in tears. I stood up to get a few alieve, thinking it was just some kind of bone pain or some such, but it was no bone pain I had ever had. As soon as I stood, the pain got twice as bad, and if it wasn’t for the loveseat right there, I’m sure I would have ended up on the floor. It was disabling, and the worse pain I had ever experienced. I only made it through that night quite honestly by the grace of God, and my boyfriend staying on the phone with me for a good while, even though I had woken him up. I made it to school the next day, but barely. I could hardly walk, and I felt as if my legs were being torn apart.

Q: What exactly is fibromyalgia?
A: The most common question I get is what is fibromyalgia? The best way to define it in my opinion comes from Mayo Clinic, and they define it as the following.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
There is much research that still needs to be done, and many in the medical community or society in general think it is fake, or something they just tell you when you can’t figure it out. This is the most frustrating part.

Q: Do you feel that your condition affects how you see blindness compared to how you viewed it before?
A: I always felt that blindness was a pain in the ass, and I took the fact for granted that it wasn’t as big of a deal. When the pain started, it really sank into me how blindness isn’t as disabling as it seems. Sure I handled it well, and accepted my blindness, and it has its very frustrating parts. It is a piece of cake compared to pain.

Q: Most of us are already acutely aware of how hard it is to find work when blindness is present. Do you know to what extent your pain will limit your employment opportunities?
A: When people first meet me, or if they don’t know me well they always say things like you are so amazing, or I don’t know how you do it. If and when they find out that I suffer in pain constantly I think that perception may shift.

Q: Does being called inspirational bother you, especially when these terms are applied by people who have never dealt with what you experience every day?
A: Yes it does. I don’t feel that I’m inspiring at all. I have been dealt an unfortunate hand in life, but I make the best of it. I’m just a woman doing what it takes to survive, and make it through. I do the things I want or need to do.

Q: Do you have any advice for others going through chronic pain?
A: My best advice is to have a great support network, because you need it. You need those who can deal with the ups and downs. Find good doctors who listen to you, and who can help you find a pain management plan. Try anything you are comfortable trying, because each case is different. If you are in school be honest with your professors, or if at work, your boss. Sometimes these people can also be a great support network, and help with accommodations. The best advice is take me time, because if you don’t you can never re-centre yourself, and sometimes that really helps with the pain, especially if you are stressed.

Q: Finally, if you could say one thing to nondisabled people who don’t understand you, what would it be?
A: Have respect. You never truly know someone’s problems until you have been in their shoes. Try your best to not pretend like you know what they’ve been through when you haven’t. Be as flexible and accommodating as best you can. We are just normal people, with differences, and we should be treated like human beings.

Believe Me: There Are Worse Things

I’ve often observed that people react to blindness as though it were the worst fate they could possibly imagine. Of course, for some it probably is (though I do wonder how good their imaginations really are). Sympathy (sometimes misplaced, sometimes welcome) abounds for visible disabilities like deafness, blindness, paralysis and so on. What we lack, though, is compassion for those with invisible disabilities–and they may be the ones who need it the most.

I’ve always been blind, and most of the time my life has still been full and happy. But I carry heavier burdens, too—burdens which aren’t easy to see. Among other issues, I suffer from chronic tension pain, migraines, and mental illness. Unless you come upon me walking out of a psychiatrist’s office or holding my head in pain while I throw up on the sidewalk, you won’t know any of this simply by watching me go about my day. Blindness causes me to suffer in highly visible ways; it’s hard to miss it when I trip over a chair or smash headlong into a wall. At job interviews, employers become immediately nervous as they mentally catalogue all the problems they anticipate. They wonder about how I will keep up with the workload. They wonder how I’ll navigate the building safely. They wonder whether my screen reading software will be supported by their current systems.

They don’t wonder how I’ll attend work regularly. They don’t wonder how I’ll find the emotional, mental, and physical energy to make it through the day without collapsing. They don’t wonder who will drive me home when I’m too weak and sick to walk unaided. They don’t think about the leave I might need if my mental state becomes too precarious.

They can’t wonder these things, because I don’t go out of my way to reveal them. Some stand behind the policy of full disclosure: get it all out of the way now so that awkward questions and explanations aren’t needed later. Really, though, If an employer won’t accept me because of a relatively superficial disability—one that can be easily accommodated—how will they feel when I reveal far more debilitating disabilities? Let’s face it: having malfunctioning eyes has nothing on being in excruciating pain, or feeling so low that you want to die.

Sometimes, I fear that people will judge me harshly if I divulge too much about my “other” disabilities. I worry that they’ll think I’m crazy, or whiny, or simply delusional. Will they label me an attention-seeker? I mean, I’m blind plus six other issues? When does it become suspicious-looking? I’ve been blessed with many compassionate people in my life ranging from friends, to coworkers, to instructors. They’ve done their best to let me know that I’m okay, no matter how many things are wrong with me, and that I don’t have to feel guilty about what I can’t control. Conversely, though, I’ve had people become frustrated and offended when I cancel plans due to a sudden migraine (it’s not like I plan them!) or bow out of an engagement because I’m feeling too down to even get out of bed. Each time this happens, my first instinct is to blame myself, even when I know better. It’s easy to convince people that my broken eyes aren’t my fault; it’s harder to convince them that I don’t choose to be depressed, or lie abed all day in pain. Some of them won’t say it outright, but it’s clear as day that they doubt me. I can’t articulate what it’s like to know that it is only my least debilitating disability that people will feel any empathy for. I don’t need help across the street as much as I need a sympathetic ear and maybe a hug.

The pitying sighs get to me after awhile, partly because I don’t need them (I get along fine, thanks) and partly because they are so misguided. I don’t want a pat on the shoulder because my eyes don’t work; they never have and they probably never will. I don’t need them in order to live contentedly. What I do need, though, is energy, will, and strength. My invisible disabilities strip all of that away on a regular basis, leaving me to struggle along in the wake of emotional and physical suffering.

Now, before I go any further, let me make it clear that I’m not saying that blindness doesn’t have its downsides. I’ve done little but write about them for the past few months. I’m also not trying to run a fishing expedition here: I’m not claiming that everyone should begin pitying me for something other than blindness. Ideally, I don’t want any pity at all. But considering the ample sympathy that is heaped upon those with visible disabilities, it would be nice to distribute some of it to those whose pain is less evident but no less unbearable.

No, you won’t be able to tell who is suffering from what unless you make a habit of asking people intrusive questions (and we all know how I feel about those). But if someone comes to you with a clearly visible disability, don’t automatically assume that it is the only battle they’re fighting. For as John Watson so aptly observed, you should always be kind, for “everyone you meet is fighting a hard battle”.

It took a great deal of personal courage to write this post, humble as it is. As I’ve said, I usually take pains to hide these parts of myself, lest I be misjudged or shunned. But as Gregg has taught me, silence is our worst enemy here. If people like me don’t speak up, then no one can understand. You can’t offer compassion for what you don’t know exists. It’s blogs like these which need to be written. It’s conversations like these which need to take place. We need to know that we can be honest. I live for the day when being frank about what I can’t control will not bring me shame or guilt, but relief and a sense of peace.