What I Wish You Understood About Chronic Illness

We are a society that loves resolution. Happy endings are preferred, but sad endings are acceptable. We wipe our tears, praising the bravery of the lost, solemnly acknowledging their worth, their beauty. Those left behind receive compassion, even reverence. “So and so was so strong, you know? You were so supportive, such a warrior.”

We know what to do with those kinds of endings and everyone can get on board. Doctors talk about the horrors of the disease. Communities rally to support with fundraisers. And all of it is right. I don’t begrudge one single person for their support, compassion, or respect. I wonder, though, why we seem to stutter and stop — and honestly, judge when it comes to battles that are fought daily, but never won or lost. How can we do better to support those (millions) of fellow humans who are trapped in a constant war?

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My daughter has been sick for about 3 years. It started after a particularly nasty virus that gave her a high fever. She thought she had burst an eardrum, the pain in her head was excruciating. After that, she started having “dizzy spells” that would come and go without warning or any definable trigger. She just felt off, then exhausted. We went to doctors, had tests, but nothing came of it. There was a lot of shoulder shrugging and “try not to pay too much attention to it — to give that weird feeling too much power.” She just tried to cope past it.

She went to college and found out she had endometriosis. It was painful. She doubled up in the middle of campus, unable to walk to class. Then, it was just like a storm of things went wrong. Her OCD kicked in — something she had been managing successfully for years. Her new doctors started throwing medications at her. Pain pills for her Endo. Anxiety meds. A shot to reset her reproductive system.

All of it was catastrophic. And in the middle of it — a new symptom. She noticed that she was losing strength in her hands. Turning doorknobs, especially around her period, became increasingly difficult. It was hard to walk long distances. She was falling apart.

The endo shot given to her had the side effect of suicidal ideation. She wasn’t warned beforehand. Her gynecologist balked when she realized, but the damage had been done. There was an attempt that summer. It doesn’t matter that it was more of a cry for help than an actual attempt to end her life — she needed someone to stop and look at her. She needed to be taken seriously — and the intrusive thoughts were relentless. She was desperate.

She took time off school to figure out what was going on. We had three goals. 1. Figure out her medications (what did she need, what was doing more harm than good) 2. Reconnect with her therapist and get the OCD under control. 3. Figure out what was going on physically. All of this is important because when someone is chronically ill, and the diagnosis is not obvious, the assumption is that mental health is the culprit. She had a lot working against her. She was young with a history of mental health issues. Many days it felt downright hopeless. Nevertheless, she got off to a good start. She started weekly sessions with her therapist (still has them) and made tremendous progress with her OCD. She got a job. She reconnected with friends. She did all the right things.

But she still got sicker.

Her hand weakness turned to arm weakness. Her dizzy spells made driving unsafe. And throughout the time she has been home (two years now) — her health has continued to decline despite her best efforts. She is bed-bound most of the time.

She has been diagnosed with POTS, a autonomic problem that creates intolerance to an upright position. Basically, her heart rate increases dramatically when she stands. She has a few more things we know for sure: migraines, hEDS, Trigeminal Neuralgia. But nothing that really explains why she can’t walk for longer than a minute. Nothing that explains her nausea, lack of appetite, eye pain, sleep disturbance, and exhaustion. The list goes on and on.

In search of answers, I googled. Many doctors would roll their eyes at this. And I realize that context is important and that I am not “qualified” to diagnose my daughter. But I can and should educate myself. And god knows our medical helpers are strained to the breaking point right now. So I googled. And I came across all kinds of ideas. Maybe she had MS. Maybe she had Parkinson’s. Maybe it was functional Neuropathy. We looked at all of them.

Then I came across something called ME (Myalgic Encephalomyelitis) and all the pieces came together. This disease used to be called Chronic Fatigue Syndrome, and for decades upon decades, it has been dismissed as one part psychiatric, one part shoulder shrug, and another part eye-roll.

I uncovered patient after patient that lead healthy, active lives until suddenly, they didn’t. Most were gaslighted by their doctors. “You have a conversion disorder. There is no reason you can’t walk. I recommend meditation and therapy.” Disclaimer: Functional neuropathies are real. And the mind has a profound effect on the body — in ways we are just beginning to understand. There is no shame in that. But that is not what ME is. And in the last 5–7 years, it is finally gaining traction as having organic causes. Heard of a Covid long-hauler? Strikingly similar. People with ME have a grab bag of symptoms that can be profoundly debilitating. This is where my daughter is. She is disabled. We wake each day with the knowledge that some new and bizarre symptom could rear its ugly head and demand more from her. It is constant grief and bracing. It is constant pressure to make the most of “good moments.” But most of all, it is a constant fight for recognition that this is real.

Megan is going to the Mayo clinic to, hopefully, uncover more about what is going on with her body. Both her doctor and I are fully expecting her to come away with a diagnosis of ME. There is some comfort, I guess, in knowing there is a name for it. But so far there is no cure. There is traction in medical circles, in part due to covid, to research it more, throw more money at it, and that is good. But it is going to be a long road.

There is no win or lose here. And that is deeply uncomfortable. Ask me today how my daughter is doing and I will likely cry. I’ll tell you the grief I suffer at the loss of her dreams. How I am fiercely protective of her because she is disappearing in a world that would have been so lucky to know her.

Ask me a year from now and it will likely look the same. It’s exhausting to maintain that level of grief. I don’t expect my friends or family to do it. I can barely manage it myself. But it feels lonely. I joined a support group for other family members and caregivers of people with ME. It has helped. Just yesterday someone posted that “some days are just so sad.” I can’t tell you what a mix of pain and relief I felt. I still cry just thinking of it.

I have much more empathy for chronic illness sufferers now. I am very, very grateful for my friends and family who check-in. Who express love for me and my daughter. It helps ease the fear that this beautiful, wonderful girl will be forgotten. They bear witness to her life and to mine, and that alone means the world. That is really the only advice I have if you know someone suffering from ME or another chronic illness. Bear witness. Resist the urge to walk away from the uncomfortable grey of this, from the urge to fit it into a box you are familiar with.

This is hard. It can’t be made better or easier. But when someone asks me about Megan, and they just let me talk about her, I feel a bit better, a bit lighter, because I get to share her with someone. It is an acknowledgment of her importance. She is here. And I love her. And that is unfathomably important.

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This post was previously published on MEDIUM.COM.

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