When You've Accepted Your Diagnosis, but Other People Haven't


Hope.

It’s a loaded word for those living with a chronic, incurable disease.

Acceptance.

For many, coming to terms with and accepting our condition takes months. Years. Decades.

For me, accepting that I had multiple sclerosis (MS) came fairly swiftly. My symptoms started shortly after I turned 20. Year after year, I struggled with strange symptoms, few answers from the medical community and a continued decline. By the time I turned 30 and was diagnosed, I’d had a lot of time to get used to my reality.

That acceptance did not come as easily for all of my friends or my family. Some felt I should seek third, fourth, fifth opinions. Others thought I’d simply be fine if I tried hard enough. A few dropped out of my life altogether.

Then, there were and are the miracle cure people. Those who hold out hope that if I endure a risky procedure, I will be cured. I will be better. They hover on my sidelines, they send articles or provide phone numbers of people who have gone through treatments.

There may come a day when I want to endure that procedure. Right now, I’m not there.

I accept my illness. I accept myself. When I receive these emails or phone numbers, I feel like these people do not accept just my MS – but me as a person.

This is not to say I have not grieved for the life I thought I’d live, or for each and every ability I lose as the years tick by. It’s not to say I don’t want to get better. It’s not that I’ve given up.

So if I refuse the risky off-label treatment, am I letting go of hope? Have I accepted MS all too easily?

It depends on your definition of hope.

For some, hope is that there will be a cure someday. Some hope there will be a cure in their lifetime, that they themselves will be cured.

Me? I hope I can live this way each day with kindness and grace. I hope I can help others with this disease and other debilitating illnesses. I hope I can keep smiling, even when everything hurts. I hope I don’t burden anyone. I hope I am still someone worth looking up to for my young niece. I hope I can keep loving everything I always have about life – nature, reading, writing, animals, family, friends.

I hope for a cure. Someday. It’s OK if it isn’t for me.

I understand those offering me miracle cure information have my best interests at heart. They love me. They want me to feel better.

There is caution there, though. Because at the end of the day, the person who is sick has to go to bed and know they’ll wake up the next day still sick. I can accept this. It’s when those around me cannot accept it that I feel like a failure. That I am not trying hard enough, or am stubborn, or without hope.

If you truly want to help someone with an incurable condition – meet them where they are, find them where they are at. And simply stand there. Alongside. Hope with them.

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