My biological Mother would have been 67 today if she were still alive. For the first 18 years of my life, I watched Multiple Sclerosis take over her body and ravage it. As a small child, I witnessed her walking with a limp to using a cane to requiring a walker and finally, she was wheelchair-bound.
When I was 13, she went to live in a nursing home. For the next five years, I watched her lose complete use of her legs, then her arms and on some days, it felt like she wasn’t even mentally there. She’s been gone for 19 years now, but it always made me wonder how I would handle that kind of news as an adult if someone had revealed a diagnosis to me.
What would I do?
What should I say?
Is there even a ‘proper’ response to a loved one telling you they’ve been diagnosed with an incurable disease?
When a very close loved one called me recently and said we needed to talk, my heart sank. Given this person’s family history, my gut already knew what she was going to tell me. It was two days before I was able to talk to this person face-to-face. In those two days, I fretted, going over a zillion scenarios on how this talk would go down. As she climbed in my car, I braced myself, almost knowing what she was going to say.
She has Multiple Sclerosis.
My personal prep work had done me some good. I held it together as she explained to me what prompted her to see a doctor, what led to the diagnosis and what the treatment plan was. At this moment in my head, I know that there are SO MANY new technologies, medications, research advancements and information available than when my Mother was diagnosed back in the 80s.. but a piece of my heart can’t shake what I saw my Mother go through.
Why am I telling you all this?
Well, I’m a planner. I prefer to be prepared for things beforehand. Yes, sometimes my mind messes with me and I have what I call “Worst Case Scenario Syndrome”, where I make up all these crazy things in my head. When you are diagnosed with something, you process things one way. When it’s someone you love and are close to, it’s a completely different ballgame.
Let me tell you this: you are entitled to feel however you need to feel in order to deal with this!
With all that being said, here are five things you can do for yourself when a loved one reveals a diagnosis:
Your relationship will never be the same again.. and that’s okay! You may not be able to do the same things you used to do. It might be time for some modified activities. Please don’t abandon the person and think they can no longer be a part of your life due to a diagnosis. Your relationship has just hit a different level, that’s all.
Learn whatever you can about their disease. What causes it, the history, what goes into a diagnosis, treatment plans, medications, anything you can get your hands on. I recommend looking at legitimate sites. You know the ones you need to avoid. Try going to your library and check out some older medical journals, then check out newer ones.
But don’t lecture.
Your research is not superior to the doctor whose care they are under. Even if you think the doctor is wrong, the only thing you can do is gently suggest a second opinion. Please refrain from calling their doctor a quack and saying a medical journal said something different. It will not help the situation. Please, unless their doctor is putting their life at risk, do not assume your research is better than a specialist’s experience.
Most are dealing with a new diagnosis by their own process. Ask them a few questions for clarification, but if you have researched beforehand, please squash the burning need to bombard them with history, treatment and cure questions immediately. There is no one disease that affects everyone in the exact same way. Symptoms vary, therefore treatments and results vary.
This is hard for them. They need you now more than ever. Let them vent and cry. As the diagnosis sinks in and they are starting treatments or medications, check in on them. Send a postcard or something that just says you’re thinking of them. Yes, texting is nice, but sending a little something goes a long way. It’s something tangible they can hold and display as a reminder.
That’s what I came up with.