The Article I Wish I'd Read After My Undifferentiated Connective Tissue Disease Diagnosis

Wendy Kennar
·6 mins read
Woman with long hair. Mandalas decorate the hair and pink background.
Woman with long hair. Mandalas decorate the hair and pink background.

To the Newly-Diagnosed Undifferentiated Connective Tissue Disease (UCTD) Patient:

This article isn’t just for you. I recommend sharing it with those closest to you — your spouse/significant other, your immediate family, and your closest friends. Because when you Google UCTD, and click on the first few links, you’ll notice each article sounds very similar. You’ll come across the same medical vocabulary, the same general terms. But, if you’re like me, you’ll wonder how this autoimmune disease will impact your life, and by extension, your relationships.

I’m here to tell you the truth, as I know it. Please do keep in mind that the following reflects my 10-year experience living with undifferentiated connective tissue disease. Don’t forget, each patient is different. Each situation is different. But this is what I know; this is what I can offer.

You most likely felt relieved upon learning your diagnosis. Most likely, it took a while to get to this stage. Doctors put you through your paces; testing you in ways you’ve never been tested before. For me, what started as pain in my legs ultimately led me to a cardiologist to have my heart checked as well as an ophthalmologist to have my eyes dilated. And there were other tests; tests that made more sense to me. X-rays, CT scans, ultrasounds, MRIs. Blood work. Urine samples. All in the quest to name your collection of symptoms. For me, it’s inflammation, pain, fatigue and weakness in my legs — with my left leg being consistently worse than my right.

Related:Download The Mighty app to connect in real time with people who can relate to what you're going through.

And now you have this name, this label, to stick on “what’s wrong with you.” And it may not be as scary-sounding as other possibilities. Doctors initially told me I could have multiple sclerosis, cancer and leukemia. I heard UCTD and thought, “I’ll take it.”

But then the reality kicks in.

On my bad days — meaning bad pain, bad mood, general “this sucks” feelings — I think UCTD is just a fancy way for doctors to say they’re not really sure what is going on in your body, why it’s happening, and how to help. When I was diagnosed, my rheumatologist told me UCTD was rare, and if I wanted to walk around and call it “The Kennar” I could. Now, I’ve always enjoyed “daring to be different,” but when it comes to medicine, I’ve decided that different isn’t always good. Different means there’s a lot of guesswork involved. A lot of re-tests. A lot of “let’s try this.”

Related:To the Doctors Who Put Band-Aids Over the Bullet Holes of My Rare Disease

Because just like no one knows why someone develops an autoimmune disease, no one really knows how they work.

My rheumatologist initially described UCTD as having overlapping symptoms of lupus, rheumatoid arthritis, and myositis, without it actually being any one of those diseases. His words didn’t help me understand what was going on in my body.

As time goes on, it doesn’t really get any easier to explain your condition to a neighbor, co-worker, or acquaintance. Because by the time you finish saying the name — undifferentiated connective tissue disease — your audience has probably stopped listening. They have never heard of it before. They don’t know what it means. There is no large-scale annual fundraising walk. No colored ribbon associated with UCTD. This means at times, you may almost wish you were dealing with a different illness, one people have heard of and doctors seem to understand better.

The initial relief you felt when you received your diagnosis may start to fade. You had a name, a label. But there are still so many unknowns you will have to deal with on a regular basis.

Related:What It's Like to Feel Constant Guilt With an Invisible Disability

Doctors won’t know exactly what to do. You will try different treatments and different medications. Some may seem to work for a while, until suddenly they don’t. You experience a flare — a worsening of symptoms — for no apparent reason.

I’ve been dealing with this disease for 10 years, and on the outside, I don’t look any worse for the wear and tear. But inside I am. Inside I am worn down, beaten and scared. Scared that someday this will get worse. Scared that someday the way I look on the outside will match the way I feel on the inside.

And in my experience, there will be plenty of times when you’ll feel as if you’re right back at the beginning. When your symptoms don’t seem to add up. When new symptoms introduce themselves. When lab results and MRIs show increased inflammation and your doctor doesn’t know why. Your rheumatologist will order tests and procedures. Many will be ones you’ve done before. Your rheumatologist will say they are important for comparative purposes, that these tests may provide answers, possibly even a new diagnosis, which would mean a new treatment plan.

And you’ll do it all. Because you want those answers. You want a full life, the least-restrictive life possible with the least amount of pain. Unfortunately, tests don’t guarantee answers and don’t always provide a clear path forward.

It doesn’t end. You will probably remain the patient the doctors can’t figure out.

Seek out others for support — others with chronic illnesses and invisible disabilities. This is crucial. In my experience, only someone else with a chronic illness will understand when you tell them you cried while the pot of water boiled for the spaghetti you planned to cook for dinner that night. Only someone else who deals with chronic illness will “get it.”

There isn’t a whole lot you can do, but seek out things that help you — whether they are “medical” or not. I have learned that help in any way is still help. Even if it doesn’t reduce my pain, even if it doesn’t make my calf feel any less sore and tight, it’s still help. Helping me smile. Take a deep breath. Feeling a level of contentment within the uncertainties. For me, it’s scented candles. Flowers on my dining table. Good books. Music. Occasional nail polish.

I’ve learned two important things within these last 10 years. First, I’m a hell of a lot stronger (mentally and physically) than I ever knew. And everyone is dealing with something. Everyone carries invisible hurts, invisible scars, of some sort.

And finally, there is this. When you find yourself asking “why me?” don’t dwell on it. Instead, ask yourself, “Why not me?”

I wish I could give credit where it’s due. I don’t remember where I first read that phrase, but it works. It’s powerful. Why not me? What makes you, or me, any more special than anyone else?

UCTD is your “thing.” But always remember, you are not alone in this.

Read more stories like this on The Mighty:

To the Friends I Miss Dearly Because of My Chronic Illnesses

When Doctors Claim You’re Lying About Having a Medical Disorder

Why My Rare Condition Puts Me in a Complicated Relationship With My Legs

My Slow and Steady Path Forward With an Invisible Disability