Q&A with Diagnosis Limbo
If you or someone you love have been diagnosed with an autoimmune disease, you may be entitled to emotional compensation, but you're probably not going to get any because it's really hard living like this and you'll probably have it for the rest of your life…!
When answering questions about my disease, it's usually from someone who has been recently diagnosed, has a loved one who was diagnosed, or are in the process of diagnosis. These are conversations I am always willing to have, since I am more than happy to share my experiences with others who are new the autoimmune world. The following “conversations” are pieced together from actual discussions with and responses to friends and family members who reached out for advice on experiencing autoimmune symptoms or diagnoses.
"What can I do if I'm starting to experience symptoms? Everything hurts, I'm depressed, and I don't know how to manage my day to day with this new painful normal."
I'm not going to lie, the beginning was terrible. It's pretty common to hit a bad depression, and it just really sucks having your body basically reject normal life. Having a motivation was what eventually helped me the most. Even though it's harder on my body, once I started riding horses again, I had a reason to take care of myself. Familiarizing yourself with the Spoon theory in relation to myself and my limits was a big help for my husband as my support system, so I was able to have someone ask me, "Do you have enough spoons to do that thing? Have you used any of your spoons today? Do you have plans for tomorrow that might cost more spoons than usual?" I also made a list for him of things that always made me feel better physically (like massages, sleep, TENS unit, etc.) and things that made me feel better emotionally (ice cream, spending time with horses, watching TV shows, etc.), so that if I was ever flaring or in a depressive state, he could have ideas ready to offer up for help.
Keeping track of every symptom, mentally addressing every symptom, giving them a name, giving it a "badness" level, and assessing my daily pain was a super important thing to keep me going and sharpen my self-awareness. A lot of times, depression may hit because it feels like your own body is gaslighting you, so addressing and accepting your symptoms is a big mental and emotional thing. Treating yourself like a personal research project can be motivational, like you're trying to solve a puzzle, and you can't just give up in the middle of it. Symptom tracking was also very helpful for my doctors since I was not the most eloquent at verbally relaying my symptoms and experiences. It wasn't until I got to Rheumatologist #3 that I finally brought in a printed copy of my tracked symptoms and set it down in front of them, so that they finally said, "Oh okay, I see, this is serious".
There have definitely also been times when my husband has had to be pretty pushy about some things too; for example, knowing that showers usually help with physical pain, but the concept of showering can feel really exhausting some days, so he's had to push me to shower even if I feel like it'll be too difficult emotionally. And of course, it helps, and I feel a little better after thanks to the heat and relaxation. Sometimes things that seem really simple can cost a lot of spoons, and things that seem really hard can actually help clean/recycle your spoons. For whatever reason, doing the laundry is like, 10 spoons for me physically, but going to the gym can actually help ease certain symptoms. Having a support system that's able to push you when you need it is vital to maintain your "new normal".
"I feel like I'm in diagnosis limbo."
"My doctor is telling me I am just experiencing ‘fibromyalgia’ and isn't providing a care plan.”
"All my tests are coming up inconclusive and I am unable to get a solid answer out of my doctors".
There is a very important stigma to understand about fibromyalgia; it has been and tends to be a diagnosis of exclusion, but it is still a diagnosis. For many doctors, including many I've worked with and respected the heck out of, fibromyalgia basically means the same as "chronic pain patient"; just a diagnosis of exclusion so that you're able to have something to put on a prescription for meds. This is actually what I also believed for years with "just fibro" as my only diagnosis, hence the self-gaslighting even though you know there's clearly something wrong.
The truth that a good rheumatologist will make clear to you is that it is a diagnosis of its own. Only within recent years has fibromyalgia been accepted as its own disease with its own criteria and markers, so many doctors may still think of it in the other way (aka "oh, we'll just say fibro because we don't know what you really have"), but it is a real thing; a real disease and a real disability. It can be a struggle dealing with this diagnosis because of the stigma surrounding it.
The very important thing, however, is that fibromyalgia is not just a disease, but also a cluster of symptoms. Some people have fibromyalgia, get diagnosed, get on the right meds, take care of themselves like any other autoimmune patient should, and are able to manage themselves well. However, such as in my case, fibromyalgia and its cluster of symptoms can be the symptoms of a more complex autoimmune disease (with certain positive blood/lab/imaging/test results). The reason we say it's a diagnosis of exclusion is because fibromyalgia essentially contains all the beginning-stage symptoms of lupus or scleroderma or Hashimoto’s or even multiple sclerosis, just without the positive test results for those diseases, or with a few missing required symptoms.
For example, I “had” fibromyalgia for just a few months until we did a blood test for ANA antibodies, in which the test for scleroderma (Anti Scl-70) was positive (literally by just 0.1%). That instantly got me the diagnosis of UCTD (Undifferentiated Connective Tissue Disease) even though my symptoms were then unchanged from my fibromyalgia diagnosis. That ANA test has even resulted negative a few times since then, but the fact that it showed up one time is enough. Because I had the base symptoms seen in fibromyalgia (weakness, joint/muscle/nerve pain, fatigue, temperature sensitivity, etc.), plus that positive test result, I have UCTD. However, I also had a few other fun symptoms outside of the fibro cluster, which are 4 out of 5 diagnostic criteria symptoms for scleroderma, and 3 of the qualifying symptoms for lupus (of which you must have at least 4 out of the 11 possible to meet criteria). These came over time and I didn't start experiencing most of them until about 1-2 years after first getting sick, but we now know to keep an eye out for those last missing symptoms for lupus or scleroderma in case my disease progresses. This is another really important reason to develop good symptomatic awareness and keep your symptoms very well-tracked.
So in summary, fibromyalgia is definitely a real disease. However, it can also be the starting point for most other autoimmune diseases that you can't "qualify" for until you have other very specific symptoms (which like to develop pretty slowly once your autoimmune factor is triggered).
Thanks to that one time a blood test was barely positive, my diagnosis is UCTD (which I usually explain to others as "pre-lupus" or "pre-scleroderma") and I am on the exact same drugs I'd be if I actually had either of those. All it takes is specific testing, specific symptom monitoring, and, unfortunately, a whole lot of personal research and patience. Never so much patience to make yourself put up with doctors who don't take you seriously (never enough for that), but enough to understand that, unfortunately, you might just have to wait for just one new symptom to develop before getting more answers.
"It's been so long and nothing is changing. Will I ever actually get a diagnosis?"
It really sucks, but the average time it can take from the first sickness to diagnosis for lupus, for example, is 11 years—possibly due to finding doctors to take your symptoms seriously, but also due to just how freaking slow the onsets of certain symptoms take. There's also a chance that I or others may never achieve a full "real" diagnosis—I might never progress to lupus or scleroderma and may just have UCTD forever—but that's still its own disease. I only started to accept UCTD as a diagnosis of itself about two years ago, and that it isn’t just pre-lupus or fancy fibromyalgia. It's still a recognized condition, a disease, and a disability, even if it's "just" a ragtag collection of symptoms that make up other autoimmune diseases. It's not always necessary to receive a full diagnosis, as long as you are receiving adequate, appropriate treatment and your doctor is working with you to manage your symptoms.
