Friends are a big part of our lives, they are who we lean on when life gets hard, and who we laugh with.
At 33 years of age, I have found myself lucky enough to have a small amazing group of friends, people who will be there for me in any capacity.
Even though I have a small amazing group of friends, I still have lost friends due to, I believe, my having been sick. Some people have drifted into the periphery of my life, some have drifted out of my life (which happens even when you aren’t sick), and some have shown themselves to be people that for whatever reason cannot be fully supportive or understanding of my illnesses which have now got on for years. I made the hard decision this year to cut a few friends outof my life because after being sick for 5 years, I just don’t have the energy to deal with situations where I continually am on the defense because of my body, my decisions around my body, or feeling let down when they can’t be there for me during really serious situations.
That being said, cutting out friends isn’t something I am really used to.
Most of my close friends are people I have known a long time 10+ plus. I’ve never been one to fight with friends. Making the decision to end a few friendships this year has been incredibly hard for me, I am a people pleaser who often prioritizes how other’s are feeling above my own emotional needs. It’s taken me many months of anxiety and constantly getting my feelings hurt to finally realize that some friendships just aren’t worth the emotional toll.
This doesn’t mean this person is bad or even that they are a bad friend, I just have to come to understand that not everyone can empathize or completely understand life when you are really sick.
I suppose that the silver lining of last year when I became bed ridden last February and then became disabled by April is that I have weeded some people out. People bring in their own biases, their own ideas about your illness, some may not think their friend being sick isn’t that big a deal, and some just can’t be there for a friend because it’s too intense to see their friend sick.
Time after time, I see other people in the “spoonie” community also struggling to maintain friendships and feeling abandoned when people can’t understand or judge the sick person harshly.
Let’s be real, its hard to imagine what it’s like to be chronically ill.
Its hard to understand the many complexities that follow and the minute details that can cause a flare up. It can be confusing to see someone be “ok” one day and struggling to get out of bed the next. Often the hardest part of someone being chronically ill is that illnesses can be “invisible”, what ails you day after day may not be something others can SEE. Friends usually don’t see your blood work, your scans, or watch your dr shake their head because you are getting worse.
This invisibility often doesn’t make sense to other people and without “concrete” proof a friend is sick and in pain, others can feel doubtful that said friend is actually sick. Those who are sick can sadly be placed in a category of being a fake or a flake.
10 years ago I attended a wedding of one of my online friends. She had very sweetly said that all she wanted was for me to attend and one of her other online friends to also attend. Even though I had never met her, I drove to Massachusetts to be there because of what an incredibly special person she was. When we got there, I found out that the other online friend had not showed up because her chronic illness had flared up suddenly.
I remember not understanding, unable to comprehend that you wouldn’t show up to such an important event. I didn’t get that you could feel so terrible so suddenly. I am ashamed to admit I judged that person, I labeled her as being a bit of a flake because at 23 years of age I had been lucky enough to never experience having to cancel something important because of how badly I felt.
In a ironic twist of fate, 5 years later I would become sick with Lyme Disease, the very same disease as this person.
Then I understood.
Oh did I understand. You can imagine the intense shame I had when I realized I had judged someone about something they had no control over. I consider myself a compassionate person but I truly dropped the ball with that one. This person is no longer here because she killed herself after her Lyme became so unmanageable she became homeless. We reconnected after I became sick but sadly I was never brave enough to apologize to her of how ignorant I was. I will never be able to apologize to her now.
So I get that it’s hard to understand what being sick is like.
I think what can complicate things even further is our Western view of medicine, that if something is wrong we take a pill and we get better. Many people believe that all illnesses follow a predictable course which ends in wellness because that’s been their only experience. To complicate things further is the fact that people are informed about certain illnesses like cancer or MS, even if its a very rudimentary view of the illness. However those around you may have never even heard of your illness let alone understand the treatment process or that you may never ever get better.
That being said, life is a learning process and we are each faced with not always understanding what someone else is going through.
I have never been divorced, I have never lost a parent, I have never been poor. I may not know what those situations feel like but I know I do my best to support my friends and family members when they are struggling even if it’s a situation is one that I have never been in.
I think another big issue apart from a friend being able to fully conceptualize chronic illness is that when you are sick you often cannot keep plans or even leave your house. I have heard many chronically ill people watch their friendships change when they can no longer go out to the bar with friends or show up to a party or even keep plans.
You become the flake, the person who always cancels, the friend who shows up infrequently and sometimes has to leave the event early.
I cannot even begin to count how many times I have canceled on people over the years. I know sometimes it had to be confusing to my friends because one day I would cancel because of my pain, another I would cancel because of my nausea, and yet another day I would cancel because I had gastritis yet again. Every time I realized I wouldn’t be able to follow through because of how poorly I felt, I would get intense anxiety about having to text once again “Im sorry Im not feeling well”. I worried a lot that my friends thought I was lying or over-exagerating.
Sometimes people don’t believe you or get tired of the canceling.
Its so hard to have a friendship end when you know the truth is that you are sick and you can’t help it.
As I stated in my other post about friendships, it’s still a two way street and being sick doesn’t give you a hall pass to not be a good friend. Even when you are sick, you still have to be a supportive friend especially for any friendship to continue. I know for me being able to listen to my friends and trouble shoot their problems allows me to feel like I am still a good friend, that Im not just “some flake who doesn’t care about anyone else”. Being able to be good friend and support people through hard stuff helps me feel “normal” and it also can allow me to feel like I am “making up” for when I cannot be dependable.
It may take some troubleshooting to figure out how to continue to be a good friend when you really really really don’t feel well…ever.
I have found that I try to focus on texting my friends a lot especially when I can’t leave my house (if you aren’t a texter…then call them or email them). Staying in touch allows the friendship to stay strong when you may be unable to show up for your friend in other ways.
If you are really lucky like me, you may have a few friends who will come to you when you can’t go out. Ive been blessed to have people in my life who will lay in bed with me, hold my hand at the ER, and push me uphill in my wheelchair. Having my friends come to me allows us to still be “together” even if we aren’t out. I am grateful to be able to stay connected with my friends this way and also grateful that my friends would rather hang out with me than go out.
These friends make up for all the other hurts, the other people who made me feel like my illness was a burden or something to be criticized. I never feel alone and I always feel loved.
Lastly I wanted to touch upon how lucky we are to live in a day and age where we can meet people across the world thanks to the ol’ trusty internet. Those who are chronically ill are often really isolated and some rarely leave their house (like me) but social media allows us to still connect with people, especially people who are just like us.
I have been honest that I am not a huge fan of chronic illness forums and groups BUT they can be a GREAT way to meet people who have the same illness as you or who are just also chronically ill. There’s something special about people who literally are traveling the same hard journey as you, someone who may also be up at 2am because of pain, someone who deals with bad dr appointments, terrible tasting medications, and the overall heartbreak of not being well.
I think that it is important for anyone who is sick to have at least one or two sick friends. They don’t have to have the same illness as you but it can be SO helpful to have someone else who understands all the complexities of being sick and in pain.
I have been lucky that I have met several people who are chronically ill, people who are so rad and amazing and beautiful and kind. We may live far apart but their love still can touch me and make me feel less scared when my pain is really really bad. Kelly from The Invisble Warrior became a friend last fall when someone told her about my blog. She has CRPS like me and over the past year, we have become quite close. She is someone I can talk to when my pain is really bad and she is also become a sounding board for me, someone who understands how difficult it is to navigate the medical system just to get help.
It’s been amazing to have someone who REALLY gets it because they are literally in the same place.
So if you don’t utilize social media a lot and are feeling lonely I would suggest maybe giving it a go. You can find TONS of sick people using hashtags. I particularly like instagram the best. Maybe message someone whose life “looks” like yours, you may end up with a friend for life!
So let me end this post with this, its advice I wish I had taken earlier:
You are allowed to cut out friends who make you feel bad or aren’t understanding. You are allowed to only let people who are understanding of your illness into your life. You are allowed to practice self care by creating boundaries with friends and letting friendships go if they cannot respect the boundaries you have set.
If you are feeling alone, hold on dear one. There are people in this world who will support you, don’t give up yet.
Friendship makes my life a lot easier, a lot happier, and give me hope for the days ahead which I am abundantly grateful for.
“So if you’re mad, get mad
Don’t hold it all inside
Come on and talk to me now
Hey, what you got to hide?
I get angry too
Well I’m a lot like you
When you’re standing at the crossroads
And don’t know which path to choose
Let me come along
’cause even if you’re wrong
I’ll stand by you”