Invisible Disabilities:

A fellow co-worker recently asked me how I could do such a good job on some days, and struggle on others. As usual, I have no idea no idea what to say. I know that, to most people, I look just like any other out of shape middle aged lady. It is hard to describe just what is going on with me in under a few minutes, much less hours! So, as usual, I make some kind of joke at my expense and move on with my day, leaving my coworker thinking I am just lazy or something like that.

I am one of the many people out there who have what we call an ‘Invisible Disability’. Just looking at me, you would never know that I am disabled at all! I don’t fit into the expectations that the majority of the population hold disabled people to, such as no wheelchair, guide dog, permanent cane or walking stick, brace, or anything else that I must keep around me on a permanent basis in order to function in the world.

So, what do I have? My particular ‘flavor’ of invisible disability is under the category of autoimmune disorder.

There are around 100 of these, and there is not much known about most of them. M.S. is one I am sure you have heard of. These autoimmune diseases tend to be attracted to one another, so if you have one you most likely have several. It makes life, and medical help, incredibly difficult.

Basically, having an autoimmune disorder means that you actually ARE healthy, but your immune system thinks that you are not. The cells, organs, and chemicals that usually protect people from infection have gone haywire, and attack perfectly healthy tissues as though they were germs or viruses. What your immune system decides to attack is what determines the type of autoimmune disorder you have. There are, however, some symptoms we all share, regardless of the type.

Joint pain:

Most doctors have told me that you cannot be considered to have an autoimmune disorder unless you have swelling in some of your joints, even if you have a positive ANA test. While Rheumatoid Arthritis is an actual autoimmune disorder all its own, all types of arthritis are considered part of the many issues we all have.

General, random pain:

To have an autoimmune disorder means to live in constant pain. We tend to not get any lower than a 5 on the physician pain scale you see at every doctor’s office, and those are just the good days. This pain can strike anywhere, anytime, and will absolutely ruin your day. Unfortunately, if we are to have any kind of life whatsoever, we need to find ways to fight through it and get things done regardless of how we are feeling. That is why you will sometimes see us just going about our day as a healthy person would: we just have no choice. What would keep the ‘average’ person in bed, suffering, is our regular day, so I suppose we are “better” at being in pain. Some understanding would be appreciated, however!

Fatigue:

We are always tired. Always. Even after a good night’s sleep (if we can even manage such a wonderous thing. Constant pain, remember?). This isn’t just your usual tired from a long day. I have been exhausted since 1994. No, I am not kidding. And I am not alone. It is like we are always being forced to function after a double shift and 2 hours of sleep every single day of our lives. For me, this is the worst part of the illness, as it causes the most health problems overall.

Random symptoms:

Sudden fevers that can last for 30 minutes to 2 weeks, inexplicable rashes or bruises, sudden abdominal pain that leaves as quickly as it comes…you never know quite what to expect when! It is certainly not going to tell us, that is for sure…

Brain Fog:

This last one is probably a side effect of the previously mentioned symptoms, but I think it is worth mentioning on its own. It is pretty much how it sounds: this affliction makes it very difficult to think, focus, or to even understand something relatively simple being said to you. You can imagine communicating while you have brain fog is nearly impossible.

Diagnosis:

For some reason, it is incredibly difficult to diagnose an autoimmune disorder, and average of 5 years. I have always found this strange, as the predominate test, the ANA, is simple and straight forward. I have found the human element at least partly to blame for this. While I tested positive for an autoimmune disorder over 6 years ago, my doctor told me that I simply did not have one. When asked why she thought that while holding the evidence, she changed the subject and began speaking of my mental health. It was more than frustrating. I have bounced around to dozens of doctors, and all of them seem reticent to do anything more than treat my symptoms (and even then, just barely). After 3 years with a WONDERFUL doctor who will admit to my autoimmune issues, and who is actually trying to help me, I am still no closer to finding out which kind (or kinds) I have. I am still being shuffled around to the different (mostly horrible) specialists who are supposed to help me, but they just blame my weight, my age, my sleeping patterns…anything other than the elephant in the room.

Gender Bias:

I know this is a hot button topic that has most of us rolling our eyes, but in this case it’s true! 80% of all Autoimmune patients are women. The reason for this is not known, but I personally believe that this percentage is why so little is known about these disorders. For example, I spoke of my 6+ year struggle to be diagnoses with an autoimmune disorder? Well, my husband’s doctor had a suspicion that he had one, and 7 days later he had results in hand and a treatment plan in place. Women are simply not believed when we say we are in pain. I am sure many of you ladies have faced some troubles in this area. If you are overweight or not “conventionally attractive”, you receive even less attention. I can’t tell you how many doctors have refused to treat me based on my weight alone, much less ones who have blamed my reproductive organs. I know this to be the case because my concerns will go unanswered, but the subject of my size seems inexhaustible. I cannot even receive help for unrelated common symptoms, such as allergic reactions and the flu, without my weight or “monthly cycle” being the sole topic of conversation.

Perhaps if there wasn’t such an implicit bias towards women who claim to be in pain within the medical world, we would be a little further into our understanding of this “lady problem” (yes, a doctor actually called it that).

While I have made no secret of my disability, I understand that most people find it difficult to understand how I am disabled. It must be strange to see me act fine one day, then sick the next with no observable reason why. I am sure many people assume I am faking my symptoms, which I also do not blame them for… just describing this illness here makes me even disbelieve my own symptoms! We all seem to hide our symptoms very well after many years of being pushed aside and viewed as “fakers” by every area of society. To this day, living in constant pain with this disorder is not enough to be classified as disabled. I actually live in fear of being fired due to my disability, as I know it comes across as me being incompetent or lazy by even the kindest of bosses (which WTB certainly has!).

Perhaps it is my own fears manifesting, but, all the same, if I do not put 150% of my energy into my job, I feel as though I would be without a way to make a living; which would make me homeless in less than a month without the government allowing me to apply to be disabled. I am one of the lucky ones, however, since my husband has easily obtained a disabled parking pass, and he has disability income, so it would not be entirely life destroying…though the $800 disabled people have to live off a month would not pay for much…but that is a problem for another time.

If we could ask for anything, it is to be understanding towards people who claim to be sick but do not fit the “mold” of disabled. If we say we are disabled, or have an invisible illness, or have bad days with no observable reason, please be kind. It will make the actual “fakers” and lazy employees harder to spot, but it will mean the world to a person who suffers in silence, mostly ignored by their own society. We truly are doing the best we can.