When chronic illness life feels overwhelming, seek joy and support

When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events, connected with other sarcoidosis warriors, and got involved in advocacy activities.

Since COVID-19 changed the world, there aren’t as many in-person opportunities today. So now, I write columns and social media posts, speak at virtual conferences, and ask lawmakers to join the newly formed bipartisan Congressional Sarcoidosis Caucus.

Yet, while this month is understandably busy, it feels a little different this year. There’s so much going on medically, personally, and even globally that I’m feeling a bit overwhelmed.

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The medical side

Even without awareness events, my April calendar is pretty full. I have three infusions scheduled for my sarcoidosis-associated small fiber neuropathy, each of which takes a full day at the hospital and leaves me too exhausted to do anything the next day. By my math, losing two days to feel substantially better for 12 is worth it, but it still takes a lot out of me.

I’ve also started physical therapy twice a week (with seven visits scheduled for this month) for arthritis in my knee. That’s partly inflammatory (musculoskeletal sarcoidosis) in nature, partly autoimmune-related (rheumatoid arthritis), and partly degenerative (osteoarthritis, exacerbated by 10 years on steroids).

Next, I saw my gastroenterologist to schedule a colonoscopy, but even that wasn’t simple. Because of my weight (again, thanks, steroids), I have to make a separate trip to see the anesthesiologist for a STOP-Bang evaluation to determine whether we can perform the colonoscopy in the office or if it must be done in a hospital. Then we can finally schedule the procedure.

Because menopause and long-term steroid use can lower bone mineral density, I had to have a DXA (bone density) scan. Unsurprisingly, the test revealed osteopenia, or bone density loss, which may progress to more serious osteoporosis. My doctor advised me to increase my calcium and vitamin D intake to protect my bones, but because these supplements can be dangerous with sarcoidosis, I have to find ways to add them through food.

This week, I’m seeing the podiatrist to address pain in my foot, which may be a bunion caused by inflammation from sarcoidosis or rheumatoid arthritis. The last time I had this problem, he gave me a series of three injections to treat it, but each injection hurt even more than the original pain that brought me there. Still, if it prevents the problem from getting worse, it may be necessary.

Later this month, I have routine follow-ups with my cardiologist and neurologist. They’ll ask about my dysautonomia, fatigue, and weight, and I’ll update them about my blood pressure, liver issues, and various aches and pains. We’ll schedule more tests, order more labs, and do it all over again in a few months.

The personal side

Last week, I brought my car to the mechanic for what I thought would be a new battery and routine service. I expected a reasonable cost and turnaround time, but I was wrong on all counts. By the end of the day, they’d given me a list of problems so long and a price tag so high that I had to contemplate whether it was even worth it for a 13-year-old car.

Even good things on the calendar can feel overwhelming when there are so many. Passover, my mother-in-law’s birthday, and my anniversary are all events to be planned. There’s also a hockey game, a show, and a hair appointment. All of this adds up, and each activity carries a significant cost in energy, requiring substantial recovery time.

Turning to community and self-care

With 16 medical appointments and their associated issues weighing on me, and six personal events taking additional time and energy, I turned to my community for support. In some cases, that was direct and literal, with a virtual sarcoidosis support group. I also reached out to my therapist to schedule an appointment (not for this month).

I regularly attend a few virtual Weight Watchers workshops, which offer group support and focus on universally helpful concepts such as self-care, self-compassion, and practicing gratitude. For a momentary break that isn’t reliant on a formal schedule, I reach out to friends via text or social media. That instant connection brings comfort, joy, and peace of mind.

For a mental respite that is both physically and emotionally beneficial, I’ve started taking dance breaks with my husband. If I use my inhaler, I can usually get through three or four songs, although yesterday, I had to stop after just one. Even if it’s only for a few minutes, that connection and laughter through the pain are a great stress-reliever.

It’s natural to feel overwhelmed when life gets overwhelming. It can be easy to shrink away and isolate. But we are not alone, and when we lean on each other, we can all reap the rewards.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.