Does that make me awful?

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Welcome to Tissue Issues, an advice column from comedian Ash Fisher about connective tissue disorder Ehlers-Danlos syndrome (EDS) and other chronic illness woes. Ash has EDS and is very bossy; having an advice column is a dream come true. Got a question for Ash? Reach out via Twitter or Instagram @AshFisherHaha.

*Author’s note: This letter was received before COVID-19 and physical distancing guidelines.

Dear Tissue Issues,

I know I’m going to sound like a monster, but here goes. I have a friend, “Morgan,” with an autoimmune disorder (rheumatoid arthritis) that causes her lots of pain and fatigue.

We’ve been close for years, but she was only diagnosed last year. Ever since, she’s a totally different person. It’s like her life revolves around RA now.

I’m glad she got an answer to why she wasn’t feeling well, but I feel like she uses her diagnosis as an excuse to get out of life. She almost always cancels on me at the last minute, blaming her symptoms. I’m tired of it.

She’s canceled on me the last three times we made plans. She always apologizes, but I’m not sure she means it. I’m sick of feeling like my time isn’t respected, and I’m considering dropping her as a friend.

Does that make me awful? Is there another way to handle this? —Bad Friend

Dear Not a Bad Friend,

Based on your letter, I can assure you that you’re not a monster and not a bad friend.

I’m glad you reached out to me before ending your friendship with Morgan. That shows that you’re considerate and truly care about her. Being upset about being canceled on doesn’t make you a monster. I’d also be upset about being canceled on three times in a row!

However, canceling doesn’t make Morgan a monster, either.

Having a chronic illness or disability isn’t a Get Out of Life Free card. I wish! I’d love to not have a job, have no bills to pay, and devote 100 percent of my time toward healing and soothing my tender joints.

Alas, the world doesn’t care that I have Ehlers-Danlos syndrome (EDS). I still need to fulfill my obligations.

The same is true for your friend. However, she may not currently be reliable enough to schedule hangouts. To put it in a different, more accurate way: Her body may not currently be reliable enough to schedule hangouts.

You say your friend was just diagnosed last year, so I’m not surprised it seems like her life now revolves around her RA. In a lot of ways, her life does revolve around her illness.

That’s not because she’s delighted by the novelty of RA, but because her pain, energy, and abilities are dictated by the symptoms of her illness.

After receiving a life-changing diagnosis such as RA, many people go through a grieving period. They may mourn their formerly active life, the future they envisioned, or the goals they can no longer achieve.

Part of this grieving process is working toward acceptance of how your life has changed (and will further change) with a chronic illness.

It’s very possible Morgan is struggling to accept that she can’t show up for you like she used to. My theory is that she makes plans with the best of intentions, and at the last minute, realizes she is too tired or in pain to make plans.

She may also be overwhelmed — by her symptoms, her treatments, her medical appointments — and is clinging to some semblance of her former life.

I say all this to try to understand where Morgan is coming from, not to excuse her behavior or to guilt-trip you (I swear).

To answer your second question, yes, there are plenty of ways to handle this situation. Here are a few suggestions I think you should try.

Stop making plans for now

She keeps canceling on you, so stop giving her opportunities to cancel. I suspect she keeps making plans because she genuinely wants to see you, and is still figuring out her limits and needs.

Her actions have made clear she’s not in a place where she can show up for you; accept that and pause future plans for now.

Suggest alternative plans

When she’s canceled, what were your plans? Going out to lunch? Shopping? Hiking?

Activities outside of the house can take a lot out of a chronically ill person.

What if you offered to come to her house instead? Make it clear that you don’t mind if she has to rest on the couch the entire visit. (Obviously, this advice only applies once the pandemic has eased. You shouldn’t be visiting friends’ houses right now, especially friends who have a compromised immune system.)

How about a 30-minute catchup video or phone call? Or watching a movie or TV show together with the Teleparty Chrome extension (formerly Netflix Party, now on multiple streaming platforms)?

Once it’s safe to do so again, consider inviting her to a low-key game night or small party with multiple friends. That way, if she can’t make it, you can still follow through on your plans, minus one person.

Make your future plans tentative

After my own diagnosis, when I was in tons of pain and grieving my formerly healthy life, I canceled many times on my dear friend Erin.

I felt awful about it; I was sure I was a terrible friend. I wanted so badly to see her, but my body wasn’t cooperating to let me do so.

One time, when I was particularly embarrassed and apologetic, she casually told me she always views our plans as tentative; she didn’t plan her days around them, and would never get mad at me if I had to cancel.

She wasn’t shaming me. She was letting me know she got it. It was a huge relief to know that I could cancel without her getting mad, and without screwing up her day.

So, if you’re able to be that friend, let Morgan know. Tell her you understand that her symptoms fluctuate, and she can always cancel on you at the last minute. Make your plans casual, and have other things planned if she can’t make it.

I’d also like to note that if you’re not the kind of person who is comfortable with tentative plans, that’s OK! If that’s the case, please ignore this piece of advice. I won’t be offended.

Talk about it

This is the most crucial advice I have to offer you: Talk with your buddy. She may have no idea you’re upset with her. She may consider you a “safe friend” to cancel on because you’re clued in to her diagnosis and have been friends for a long time.

You don’t have to treat Morgan with kid gloves just because she has a chronic illness (to be clear, that doesn’t mean you should be rude to her).

Treat this the way you’d treat any conflict with a loved one: Vent to a trusted friend or partner, get some advice, plan what you want to say, and let Morgan know you want to talk to her.

Tell her you’re hurt that she keeps canceling on you, and that it makes you feel disrespected or not important or [insert your feelings here]. See how she responds.

If the conversation feels productive, ask her what she needs from you to make hangouts easier and more accessible. And don’t forget to tell her what you need from her!

Friendship is a two-way street, whether or not one (or both) of you has a disability. It’s OK to have needs. The hard part is figuring out what you each need right now, and whether those needs are compatible at this point in time.

So, my dear non-monster, that is my spiel.

I hope you and Morgan are able to work it out. If it turns out you do need to end the friendship, or step away for a bit, that’s understandable.

Yes, it’s sad, but friendships end. It doesn’t make either of you a bad person.

In my life, I try to keep in mind that friendships tend to ebb and flow in terms of closeness and amount of contact. Just because you aren’t super close right now doesn’t mean that won’t change.

I’m thinking of you, and I’m cheering you on in whatever steps you decide to take.

Wobbly,

Ash


Ash Fisher is a writer and comedian living with hypermobile Ehlers-Danlos syndrome. When she’s not having a wobbly-baby-deer-day, she’s hiking with her corgi, Vincent. She lives in Oakland, California. Learn more about her on her website.