You have what? What is that? Yep, I hear these questions a lot. I understand because before two years ago, I hadn’t heard of it either. I have spent the last two (and a quarter) years learning about my chronic illness and trying to come to terms with my new normal. Some days I do better than others.

I always thought that I was pretty healthy. I mean, other than seasonal allergies, I seldom got sick. The only time I ever got the flu was immediately following the three times I was forced to get a flu shot (when I was in the Air Force). When I stopped getting the shot, I stopped getting sick! (Not saying it’s the same for everyone, but that’s how it is for me.)

When I was in my 20’s I began having neck and knee pain, though I didn’t know why. I hadn’t “hurt” them, they just hurt. In my 30’s hip pain, elbow pain, IBS, exhaustion, & migraines came along. I still didn’t know why I was in so much pain, and it just became part of my life. The weird thing was, it wasn’t consistent. All of it would come and go. Which also made it hard to treat.

My 40’s brought more pain and more exhaustion. There was also brain fog, heat intolerance, neuropathy, stiffness, weakness, heart palpitations, and more. It also brought a diagnosis. Undifferentiated Connective Tissue Disease.

Un… what? Undifferentiated Connective Tissue Disease, or UCTD, is an autoimmune disease that is unspecified. Meaning, it is a disease in which the immune system gets confused and attacks the body it is supposed to be protecting. It is unspecified because it doesn’t meet all the criteria for a specific disease, like Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, MS, and more. Each specified disease has certain criteria that need to be met before it is diagnosed. A person with UCTD has symptoms or blood work for one or more of the known autoimmune diseases, but not enough to receive the actual diagnosis. A diagnosis is made through physical symptoms and blood work.

Typically a person with UCTD has a tendency to lean toward at least one specific disease. In my case, I have symptoms or positive blood work for Lupus and Sjogren’s, but I don’t have enough characteristics of either of them to actually be diagnosed. So UCTD it is… for now.

Most autoimmune diseases are challenging to diagnose because not every person presents with the same symptoms, and because symptoms frequently come and go. The cycle of flare and remission makes it difficult to see the whole picture and thus get a diagnosis. In fact, the average time to receive a diagnosis for either Lupus or Sjogren’s Syndrome is typically between 3 and 5 years. And this is why I say I have UCTD… for now. It may stay this way and never progress further to one of the others, or it may develop into full-blown Lupus or Sjogren’s Syndrome. If the UCTD never progresses to another specified disease, then that’s what I have. It may get worse, or it may stay the same. Only time will tell.

So what symptoms am I experiencing? First, and foremost, the arthritic pain in virtually all my joints. Muscular weakness. Peripheral neuropathy. Dry eyes and dry mouth ~ but not like “normal” people get… I have no tears and frequently have to drink water as I eat to wash down the food. Exhaustion. Migraines. IBS. Brain fog or cognitive dysfunction (I think that’s the hardest to deal with because I remember when I used to be smart, sharp, organized, have clear thoughts and speech, etc). Heart palpitations. And… there is plantar fasciitis and diverticulitis, which may or may not be related.

So how am I? Basically, I’m a train wreck. I hurt all the time. Every single day. The only change is the location and pain scale. My hip and knees go out frequently (which is especially fun when navigating the stairs). The brain fog is the worst ~ I’m forgetful, can no longer read or speak well, can’t concentrate, and have great difficulty articulating a thought. I am exhausted, yet sleep poorly (vicious circle). I have to pick and choose my activities carefully because doing too much today guarantees that I’m out of commission tomorrow, and maybe even for a few days. So I rest, and I recover.

This is my new normal. And some days are better than others. I try to not let it get to me, but that’s not always easy either. I’m trying to be the best mom and wife that I can, and I’m blessed to have such a wonderful husband and daughter, who love me regardless of my abilities or limitations. Though my life (or health) is not perfect, I know it could be much worse. And I know God can still use me, I still have a purpose, and though I am weak, He is strong. Amen!

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.  ~  2 Cor. 12:9-11