I Have Chronic Illnesses, But I Don’t Always Want Your Help


I have been sick for 20 years. My diagnoses are Sjogren’s syndrome, mixed connective tissue disease and fibromyalgia. My chart also says inflammatory arthritis. The point is I’m sick, and it’s not going away any time soon.

The point is also that all my conditions are degenerative. They get worse over time, and I have had them a long time. So yes, I am much worse now than when I started. And that’s OK. That’s what I prepared for. I don’t like it. But I always knew it was coming.

Which leads me to this: There are things I used to be able to do that I can’t do anymore. A lot. More than I actually care to admit, really. Like the standard arthritic inability to open jars of any kind. I’m an Italian who cannot open sauce jars! And there’s this: We’re old school. My car does not have power windows or locks, and my fingers just don’t have the grip anymore, making me an inadvertent victim of child safety locks on my own car doors. I am waiting for the day I lock myself in!

I also can’t carry things anymore. Not just up and down stairs, but almost anywhere. Whether it’s losing my balance, carrying things that are too heavy or my insanely weak hands, I drop everything unless it’s strapped to my body — which I have actually done with bags of groceries. That did not go well.

So with these issues (and more) after 20 years of being sick, you’d think I’d be grateful for any help I can get. But that’s not always the case. And here’s why: With all I have lost the ability to do over the years, I need to know there are still things I can do.

Don’t get me wrong here. I appreciate help, especially when my body is in full-blown attack mode. But on days when it’s calm, I need to feel “normal.” It’s important for my psyche. And I need to be useful. That may be one of the biggest things I have lost: my purpose. You see, I have struggled all these years not to give in to this disease. I tried to do everything I could not to let it show. I raised a family, I held a job, I cooked and cleaned. I know I didn’t do it all well, but I did it. And over the years, I slowly gave up things here and there that hurt the worst or I just could not do anymore. And I accepted it because I was able to keep doing the big stuff.

But that changed a few years ago when I had to stop working. It changed even more last year when I had to go on disability. Just like people are identified by what they do for a living, those of us on disability can tend to be identified by that word.

So now I still struggle against this disease, but not to keep going and do everything. I know my limits and I accept them. I struggle to keep my identity. To keep my purpose. And a big part of that is continuing to do what I can when I can. So although I appreciate all the offers of help when they come, please understand that when I don’t accept them, it’s because I need to be doing it myself. I need to be purposeful. And for this short time, I need to feel “normal.”

Sharilynn
Sharilynn.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Fibromyalgia

When a Doctor Said My Fibromyalgia Treatment Was ‘Hilarious’

I have received many comments and advice about my pain under the guise of well-meaning concern. So this is my response, a kind of plea to those who may or may not get what people with invisible illnesses are going through. Lakshmi wearing Kinesio tape. My younger son Vishruth had some kind of swelling under his eye and I [...]

To the Doctor Who Said ‘You’re Too Young for This'

“You’re too young to be in this kind of pain,” my doctor told me, typing something into my chart. “It’s frustrating that we can’t figure out what’s wrong with you.” Lady, you’re telling me. That was the third time that year I’d been to my general practitioner for chronic pain, fatigue, vertigo, skin irritation, sleeplessness [...]

To the Person Who Doesn’t Know What Life With Chronic Illnesses Is Like

Picture this — you wake up in the morning and want to take a shower. However, you know if you do that, you risk using all your energy and strength and not being able to do anything else all day. Imagine a world in which most of the housework is left up to your children. Forget about being able to [...]

If Your Fibromyalgia Could Text You, It Might Look Like This

Fibromyalgia is a chronic disorder characterized by widespread pain, diffuse tenderness, extreme fatigue and a number of other symptoms, according to the National Fibromyalgia Association. The invisible illness manifests itself in a variety of ways, and it can be a real pain in the neck — like an unwanted friend who just. won’t. stop. texting. you. [...]