When It Seems Like the Complications of Autoimmune Disease Will Never Stop

Can we be real for a minute?

Like… really real, as I vent my frustration on the reality that is autoimmune disease?

That kind of real?

I am the eternal optimist. I have always been an optimist. I spent my childhood as a Marine Corps brat, moving from place to place. I generally had a great attitude about picking up and moving away from my friends every three years or so. I always found something good to focus on. A new adventure to have, or new friends to make. A new path to whatever my future held. I adapt pretty well and can usually find the happy in any situation.  As an adult, in the workforce for the first time, I earned the nickname “Pollyanna.” My co-workers even put a sign above my cubicle that said, “Pollyanna’s Happy Abode.” It is only appropriate that I would be nicknamed after a Disney film.

I was probably really annoying with all the smiling.

Three years after my lupus diagnosis, I still smile… and I still find plenty to be happy about. But I’ve got to tell you, it’s a lot more work some days. Some weeks. Some months. Just being real here.

Ever wondered what autoimmune disease is like?

An autoimmune diagnosis is like someone handing you a ball of yarn and saying, “Here. Hold this and don’t drop it. Start unraveling and let me know when you find the end it.”

It’s frustrating unraveling a ball of yarn. As you unravel, knots form that you think you can’t possibly untangle. It’s discouraging and feels impossible to keep the yarn from twisting and tangling on itself. And as soon as you work out one knot, you find that another has formed while unraveling the first. The more you unravel, the bigger the knots get and the more frustrated you become. Because how can someone possibly deal with this much yarn?

Everybody’s knots look different, but here are a few of mine… see if you can relate:

— A bad lab value that results in more lab work, which results in new bad lab values not previously discovered. Resulting in more lab work and…

— Another diagnosis for another autoimmune condition to go with the first. Resulting in more lab work and…

— A referral to a new “ologist” (Pick one here… rheumatologist, dermatologist, immunologist, hematologist/oncologist, gastroenterologist. Your particular “ologist” may differ.) which means more appointments and more lab work.

— Each “ologist” visit likely raises more question than it answers. Oh… and lab work.

***Disclaimer: I love all my “ologists” and I am quite thankful for their knowledge and care.

— Medications that are added and taken away. Some that have bad side effects so new meds are needed to counteract those.  Or maybe that side effect is really a new symptom of the disease? Let’s do some lab work to figure that out.

— Finding that a particular treatment acts as poison to your body, so it is no longer an option. Only, it’s a treatment that actually works to make you feel better. With it being off the table, what will you use to now? Is this the new status quo? Can you feel better?

— Because there is a lack of funding and research for autoimmune disease, there aren’t many treatments to fall back on when one doesn’t work. It’s like someone has taken away your pair of scissors.

In the midst of working out all these knots, you continue to have hope. You know that if you can just get past the knots and back to the task of unraveling the yarn, you might actually make some progress and complete your task.

Except with autoimmune disease, there is no end to the yarn. There is no cure. You may go into remission and set aside that yarn for a bit, but you very well could be picking it up and have to start unraveling again at any point.

It’s enough to take away that optimism, isn’t it?

No.

It’s eye-rolling, foot-stompingly frustrating sometimes. The effects lupus has had on my family has made me angry at other times. Lupus doesn’t actually ever leave my mind because I hold that blasted ball of yarn every day. But it can’t steal my optimism if I don’t let it.

Maybe optimism is a little harder to come by. Maybe I have to work a little harder at it, and maybe my smile is not quite as easy as it used to be. But that optimism remains. I’ll continue to look for the good. I’ll continue to point out to myself where I believe God is working and touching my life. And I’ll keep fighting that ball of yarn.

If you need me, I’ll be over here… working the knots out.