5 Groups of People I Trust to Support Me Throughout My Illnesses
Before I realized I was sick and not getting any better, I was a teacher. I would always do a protective behaviors lesson with my class on the last day of school. I wanted to make sure my students knew they could talk to someone about their issues no matter how bad it seemed. I asked students to identify five people that they could go to for help. These people all had one thing in common: They were people who could be trusted and be depended on.
I created many personal safety networks of my own during demonstrations to my classes and was always careful to draw attention to my selective criteria and reasoning for each person. Can I easily assess them? Do I feel safe with them? Do I feel like they listen to me?
It’s only after years of battling with chronic illness that I have actually really thought about my own personal safety network. As much as I was telling my students they had the right to be listened to and feel safe, I realized I also had that same right.
The very first group on my network was obvious. Family members are always my number one supporters, and they’re also can be a devil’s advocate when needed. They’re the first to notice when things aren’t OK and also the first to give me a much-needed push when I’ve given up.
My mom, grandmother and husband have dropped everything to rush me to the hospital numerous times, and they’re experts at not showing me how worried they really are. But they can also get upset at me when I’m not trying my best to look after myself, and they give me reasons to get out of the house so I’m not spending days on end alone with my cat.
I thank them for encouraging me to get help for my obsessive tendencies when I was a teenager, for finding a doctor who would take my pelvic pain issues seriously (and go on to diagnose and treat me for endometriosis) and for pushing me to find answers why I was experiencing stroke-like symptoms at only 29. They’re the ones who will ask doctors questions I forget to ask (or don’t want to ask), and they ask me how I am feeling numerous times a day.
I know it must be hard for my family members to see me so sick, and I know sometimes it must just be easier for them to just pretend that I’m not, but they don’t and for that I say thank you.
2. Old friends.
I’ve heard many stories about people who are chronically ill losing people in their life after their diagnosis. It can be hard to keep friends when you constantly need to cancel plans last minute, aren’t able to be there for people when you want to be and no longer seem to have the same values and attitudes that you use to have. You see, being chronically ill changes you. Like any major life change in life, people seem to get left behind in the transition. This can be upsetting, especially when you’re so desperately tying to hang on to the life you use to have.
I’ve been lucky that many of my old friendships have actually strengthened. I’m sure there have been many times some friends have sighed audibly when I told them we couldn’t meet at the last minute. But they never tell me that they felt inconvenienced and still make an effort to make me feel like I’m a part of their lives.
I am so incredibly blessed to have a tight group of friends who always text to see how I am, pop in with surprises when I’ve had an especially tough week and, most importantly, treat me just the same as they always have and make sure my health is still being maintained.
Thank you to all my old friends.
3. New friends.
Being diagnosed with any disease, let alone a rare one, can be isolating. It’s hard to not have your health issues overtake your life, and it’s nice to be able to talk to someone who has some experience with what you’re going through.
This is why my number one recommendation for anyone who is newly diagnosed with a disease or illness is to look for support groups in your own local area or online. I’m so lucky to have found a wonderful online community to support my myasthenia gravis journey, and I find so much comfort in being able to know that advice and comfort is only a short message away no matter what time of the night or day it may be.
Thank you to all of my new friends for your strength, courage and knowledge.
4. Medical team.
You need a medical team you can trust, otherwise a life with chronic illness is going to be incredibly difficult, overwhelming and frustrating.
I’m lucky to have finally found an amazing medical team who I completely trust, and I know they want what’s best for me. They don’t look at me as a textbook case. They see me as a person with a multitude of autoimmune diseases and mental health issues. Most importantly, they look at me as a person, not just my illnesses.
This, however, hasn’t always been the case. I had a doctor who told me I was just a girl who “couldn’t handle pain” after giving myself a concussion from passing out and smashing my head on the ground from endometriosis-related pain.
Thank goodness that’s in the past, and I now have an incredible medical team who gives me all the time of day I need, calls me to check up on me weekly and gives me options, not dead ends.
If you don’t have yourself as your biggest motivator and supporter, then your journey to self-improvement and recovery is only going to get so far.
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