Life with chronic illness

chronic_FBI’ve been seeing a lot of posts lately with this title. Patients with an incurable, chronic illness are sharing glimpses into their worlds. It think this is absolutely wonderful. However, I get concerned when patients talk about the emotional toll of their illness because it can come across so hopeless and desperate. It is true that sometimes having a chronic illness makes it difficult to feel hopeful. It is easier to become depressed and anxious, too. I’ve been there many times.

But it’s not always like that for everyone. It is possible to experience happiness and satisfaction with life even with a chronic illness. Just because my pain isn’t ever going away doesn’t mean that it gets to control every aspect of my life. It certainly influences my choices and plans. I have had to adjust my expectations and learn new limits. I have incorporated new habits that healthy people don’t have to include in their lives. Those routines and habits aren’t all bad. What’s so wrong with good sleep hygiene or eating regular healthy meals? Is drinking a ton of water every day such a sacrifice? Giving up artificial, chemically processed “foods” might have been a temporary blow to my taste buds, however, they have learned to adjust.

Unlike a healthy person, I can’t afford to be careless. I will pay for it with a pounding head, aching legs & back, nausea, photophobia, and phonophobia. I pay a price every time I “live a little”. So I get to learn how to have fun in different ways. I am long past the time of mourning and longing for a normal life. I’ve had migraines as far back as I can remember, so there really isn’t a “before” to wish for.

For the first 30 years I tried desperately to pretend it wasn’t happening. I acted as if I wasn’t sick. That worked until the inevitable “migraine from hell” decided to hit me at work, at a party, or anywhere there were other people. I couldn’t pretend anymore. When the migraine subsided, I would brush it off and go back to pretending I was healthy. That was absolutely nuts!

After I was diagnosed with chronic migraine and chronic cluster headaches I decided to start acting as if I were dealing with a serious, incurable illness (like diabetes, lupus, or COPD). I have to laugh now. I had no idea that the problems I was dealing with were really as serious and incurable as the other diseases I thought of. These headache disorders have been proven to be neurological in origin, with no known cause or cure. Doctors now instruct patients to try to limit the number of attacks because no one knows for sure if frequent, uncontrolled attacks result in cumulative brain damage. We do know that women diagnosed with migraine with aura are at increased risk of stroke and that all migraineurs are at greater risk for heart disease.

When I learned these facts, I started taking my health a whole lot more seriously. In my 20s I would joke with my husband during an attack by saying, “I’m not going to die from a migraine.” But that’s not funny anymore. It’s rare, but patients do die from migrainous stroke. Others die by suicide as a result of losing hope that they will ever be taken seriously enough for some doctor to help relieve their pain. Still others die from accidental drug overdose because in their migraine haze they didn’t realize how much medication they were actually taking. Migraine and other headache disorders can be lethal.

To borrow a phrase from autism awareness, if you know one person with chronic migraine, then you know one person with chronic migraine. We’re not all alike. Our personalities, culture, socio-economic status, education, and personal histories all influence who we are and how we cope with this incurable disease. We’re as unique as snowflakes. The next time you meet someone with migraine, slow down. Resist the urge to compare them to any other migraineur you’ve ever met. Get to know the real person behind the pain. You might be pleasantly surprised to meet a new friend.

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