Supporting a Friend with a Rare Disease

It can be difficult being friends with someone who is chronically ill. They often have to cancel on you, or they might be exhausted at the start of an event and practically have to be carried out at the end. You may not know what to say to them or how to show your support throughout their good and bad days.

Having lived through this for over 15 years and having many friends in this community has taught me the following:

1. “Thinking of you.” A simple message can mean the world to us, even if it’s only three words. It fills our hearts and reminds us that we are not alone in this battle.
2. Ask, “Is there anything I can do?” Most of the time, the response will be a “no, thank you,” but again, it is so good for us “sicklings” to know that people care and want to make our lives a little easier.
3. Cook a meal. Exhaustion is common for us and makes mustering up the energy to cook dinner nearly impossible. Frozen, ready-to-eat meals are an absolute lifesaver, and we don’t have to turn to our spouse or caregiver to do the cooking again.
4. Include us! We may not be able to join you at the water park or fun fair, but we would still love an invitation. And if you are going to the park for a picnic, then we would really love to come. We may not be able to participate in the strenuous outings, but we want to know that you do want us around.
5. Celebrate our good days. I have friends whom I can phone on any day and say, “I didn’t slur today!” They will understand my excitement. I have other friends who brought champagne over when we reached the fundraising target for my stem cell transplant so that we could all celebrate. My tribe lifts me up and allows my small victories to be great.
6. Allow us to wallow and cry. Sometimes, we have bad days. Sometimes, we want to acknowledge how unfair it is that we are sick. Don’t brush it under the carpet and tell us that things could be worse. Let us have a bad day and feel our emotions, and be there to give us a great, big hug before wiping away our tears. We can’t always pretend that everything is fine and dandy, so sometimes feeling our sad emotions allows us to appreciate the good days even more.
7. Offer lifts. Often, I didn’t have the energy to drive myself to the shops, so friends took me there and walked around with me. Or they gave me a lift to the doctor or the hospital. It made the world of difference to my husband and me, and it took some of the pressure off my husband so he could enjoy just being a human.

Most of all, just be our friends. It is very lonely being sick, and we often feel deserted by our friends. They can move on in their lives, and we feel like we are holding them back. Depression is a common side effect of constantly fighting your own body, and this nasty voice in your head tells you that you are worthless and unloveable. Remind us that this isn’t true. But also give us a wake-up call if we are allowing our disease to be the sun around which we orbit.

Life is for living, and it is only with your help that we truly can live!

***

Myasthenia Gravis 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.