One of the most painful aspects of my chronic illness has been dealing with loss and grief, especially in losing valued relationships with family and friends.
Battling a chronic illness is hard in so many ways. One of the hardest parts for me has been accepting support and letting those who care about me in. I’ve grown so accustomed to internalizing my emotions and processing new information on my own. Consequently, I end up isolating myself and turning anyone who tries to help away.
While I am at fault for many of my lost or faded friendships, there are so many things I wish I could have said that may have led to a different outcome in the relationships. I forget that sometimes my friends and family struggle just as much as I do in not knowing how to help and support me.
You know the saying, when you assume you make an “ass out of you and me”.
Don’t assume I’m feeling fine because you think I look great. I know you’re trying to be nice, but it’s called an invisible illness for a reason. I hate having to explain why I may look fine but I’m not feeling any better. Instead, just ask me if I’m feeling better or if there’s anything else on your mind.
I constantly downplay my struggles because I don’t want to be that person who’s constantly complaining or being selfish. If I’m telling you about my pain, I’m deliberately choosing to be vulnerable with you because I want and need your support.
Sometimes I’m just frustrated and complaining. I’m not looking for you to fix the problem – I just want someone to listen. I’ve more than likely tried or heard the suggestions or advice you have to offer. Listen with an open mind and really hear what I have to say.
While you might have a friend/aunt/co-worker who suffers from the same chronic illness, their experience is most likely completely different from mine. Each person experiences his or her disease and treatment in a unique way. While I know you may only be trying to help, try to refrain from drawing comparisons to others you know with similar conditions.
Understand that I don’t cancel plans because I want to. It’s because I have to. I want to go but sometimes I just can’t and I already feel guilty about that.
I feel isolated all the time so when someone reaches out to me just to catch up, check in, or say hi, it can quite literally make my day. Text me, message me, Snapchat me, tag me – anything to remind me that you’re thinking of me and I’m not forgotten.
My energy levels are just not what they used to be. Keep in mind how draining things can be when making plans. Try to avoid loud restaurants, late nights or a lot of walking.
Often in large social settings, I get anxious and feel out of place – not everyone knows and understands my limitations. I struggle to verbalize how I truly feel because I get embarrassed. Help me find a place to sit and have a conversation one-on-one with me, or suggest we go to the bar to get a glass of water.
One of my greatest fears is being a burden, so I isolate myself and push people away. When I stop hearing from you, it confirms my fears. Keep inviting me to hang out even if I often say no. One day I may say yes. I still want to feel included and be a part of a community.
Learn to embrace the new me. Don’t have high expectations or compare me to my old life – accept me for where I am right now, not where you want or need me to be.