Living with Rheumatoid Arthritis and making new friendships

2
295
set yourself on fire

I don’t have many friends.  And the people whom I do consider friends, I don’t see very often.  Why? Because I struggle to keep up with the day-to-day on my limited upright hours.  Most times leaving the house will cost me the day I go out, and another day to recover.  Much as it would be fun, and good for my mental health (if the friend is a good one), most times it is just too hard for me.  It takes too much effort.   When you have limited function, you have to knock over the essentials of life first, and hope there is something left over for fun.  Usually there is not.

It quite frankly sux.

I know this sounds insulting to the friends I have.  I know that sometimes people feel like I neglect them, and that I’m not worth having as a friend.  I understand that, and its OK for them to feel that way.  They are right, in many ways.  But still, I have some friends who keep me in their life, who chat with me on occasion, and who support me from afar.  I appreciate those people immensely.

Years ago I had more friends.  I worked my butt off to maintain those relationships.  I pushed myself well beyond my limits to keep those friends happy. To keep those people in my life.  You know what happened?  Rather than appreciating that I was giving my all, and understanding what it cost me, and therefore feeling like a very important person in my life, they just expected more. 

More of my time, more of my energy, with the refrain “I knew you could get out more if you just tried a bit harder, if you just WANTED it more…”

I didn’t want it more. I didn’t want to try harder.  I didn’t want to have to break myself to maintain that friendship.  I wanted to be accepted for who I am, and what I can give.   Ultimately many of my friendships wind up with major misunderstandings, and not a little bit of resentment on both sides, simply because those ‘friends’ cannot understand that my chronic illness is REAL.  And my chronic illness is DISABLING.  And my chronic illness is incurable. 

I didn’t choose that. It’s just fact.

This is the most common scenario when I try to make a friend.  Stop me if you’ve heard this one before…wait, you’ve probably lived this one before…

But anyway, here goes…this is a summary and combination of about the last seven out of ten people I tried to be friends with over the last ten years.

I meet a new friend who is really lovely and wants to be friends. 

I am excited to meet a new person and hope to enjoy getting to know them.   I like hearing about other people’s lives, and I don’t much like talking about my illness.  I explain that I have very limited energy and I live with high pain levels daily.  And I pretty much leave it at that, unless asked for more information.

My new friend knows about my illness.  They understand.  It feels wonderful to be understood and that someone wants to put effort into getting to know me.

We arrange to meet.  I am forced to cancel.  I get very afraid that its all over, that I’ve ruined it.  I apologise profusely.

But no, its OK.  We reschedule and meet for coffee.

I enjoy it.  She’s a lovely person.  I love hearing about her life, her family, her work.  I love hearing people’s stories. I am an empath and a good listener. 

But it costs me. 

I sit on the hard chair for two hours and need to leave.  I don’t want to, I’m enjoying myself. And I say so.   I stay another half hour, but eventually my body says “NOPE!  Get your ass home while you can still drive!”

When I rise, the pain smacks me in the jaw (and everywhere else) and I hobble to my car.  I’m happy, excited, and look forward to meeting up again.   I had a great time.

The next day I am still smacked down.  Not only did I get nothing done yesterday because I went out to coffee, I get nothing done today because I am recovering from going out to coffee yesterday.

One three-hour coffee date takes to up two of my person-days and puts me three days behind.

It’s still worth it.

We chat online.  Get to know eachother better.  We only chat once a week or so, maybe even once a fortnight. 

And then it begins.

She sends me photos of her swollen knee.  “Is this arthritis?”.  I say it may be, but only a doctor can tell her. I advise her to get some testing done.  She agrees.

She tells me she’s always had these aches and pains, but previously she “cured” these and her ongoing stomach pain with Reiki of Bowen therapy or acai berries.  She says she’s going to start those treatments again.

Fabulous, I say.  I’m glad they help you, and I hope you see results soon.  Pain sux. No one wants to be in pain.

I ask about her therapies and therapists. I’m genuinely interested, and keen to know what helps and doesn’t help her.

I message her to ask her how she’s feeling, how she went at the doctor, I‘m keen to hear what the doctor said, and offer support.   Being diagnosed with a chronic illness can be tough.  She has had some tests and is waiting on the results.

She asks me if I’ve ever tried alternative therapies.  I tell her I have, many therapies, all with the same result – they cost a lot of money for little benefit.  Some I maintain because I have found some benefit.  Nothing has been earth-shatteringly helpful…its all small, incremental things that add up.  Every little bit of ‘help’ counts. 

She asks me if I “tried them long enough”. 

I tell her I believe I did.  But everyone’s different, and what works for one might not work for another.  Diplomatic.  But also true.

I’m not enjoying where this conversation is going, I’ve had this conversation so many times before, but I say nothing more than “I tried”.  I know she believes strongly in these treatments, and I respect that.   

Before long, the only conversations we’re having are about her swollen knee, her migraines, her stomach pain and her alternative therapies.  She doesn’t push, but there is a strong undertone that I should try her remedies. 

She tells me that all chronic pain is the result of unresolved trauma.  She tells me about her trauma.  She does not ask, nor offer to listen to my trauma.  Clearly she knows its there, because she’s just explained trauma is the root cause of all chronic pain.  The more pain, the more trauma to unpack.

I do not believe this to be true, but I do not argue, I listen.  I tell her that I don’t think there is one root cause for all pain, but I absolutely agree that trauma is the cause for some people.

I don’t say that I know that chronic pain is much more complex than that.  You can’t reduce chronic pain to one thing, one cause, one neat sound bite for your marketing pitch.

She tells me more about her therapies.  It’s a long list. Acupuncture, probiotics, turmeric, Reiki, regression therapy, cutting gluten and dairy, tai chi, pilates. These are almost all things I’ve tried and found either unhelpful for me, or they’ve helped some, but they’re certainly not a cure.  I don’t’ say anything negative, I ask questions and learn more about the treatments. And I tell her I’m very happy that they work so well for her.  

And I AM genuinely happy for her.  If it works, keep doing it, I say! 

She’s going out this weekend. Dinner and drinks, do I want to come?

I thank her but tell her I can’t go out at night. I’m wrecked by 5pm.  These days it’s more like 3pm.

She pushes. Just this one time!

I tell her I haven’t been out after dark in a decade.

She asks why I don’t want to.

I tell her I do want to. I’d love to go out for dinner.  Relax, be waited on, good food, no dishes. Adult conversation, some wine.

But I can’t.  I’m too exhausted in the evening, and in too much pain by 5pm to get in my car and go out.  Also, I don’t generally eat solid food anymore.  And when I do eat, I only eat very small portions. Then there’s my budget…its so tight its almost inside out.

She tells me I should just try it, maybe if have a more positive attitude, and have some actual fun with normal people, I’d find it wasn’t so bad after all.

Normal people.  Hmmm.  I guess that’s fair. I’m not normal. 

The conversation has gotten awkward.  I feel very clearly that she thinks I could try harder, be better, do more.  But I know I am doing my best to just survive.

And then, I have a full body megaflare and am knocked down.  I don’t answer one of her messages for over a week.  I was honestly too sick to log onto facebook. 

When I do message her, I’m greeted with one-word responses, and the cold shoulder.  A quick exchange.  I can feel her antipathy, but I tell myself I’m imagining it.  I’m being paranoid.  

I send her a cheery message a few days later asking how she’s doing.

She leaves the message on “read” for a week, and then responds.  With another three-word answer.  “I am fine.”

It’s quid pro quo.  I ignored her for a week, so she’s ignoring me back.  Sigh.

I send another message in another few days.  She’s more chatty now.  She tells me she’s doing well, and that she’s cured of all her pain because she started xyz supplement.  She’s got no more joint pain, no more stomach pain, no more brain fog and she has energy!

I’m genuinely happy for her and tell her so.  I ask if she wants to get together.  I shouldn’t offer that up because I am still too sick and in too much pain to go out.  I just want her to know that I am not ignoring her because I’m an asshole. 

Or maybe I AM an asshole, but I can’t help it, being sick has made me a behave like an asshole.  But I am not doing it on purpose, I am not choosing it.

It is just a sad fact that people in my life need to be OK with that.   

She ignores the invitation.  I’m a little relieved because I really am not physically up to it, but also I’m hurt that she ignored it.  We keep talking about her cure, and I tell her I’m very glad to hear it.  She now outright tells me to try the remedies, that she’s sure they’ll cure me too.

I feel pressured into buying supplements I know won’t work.

“you’ve got nothing to lose”

Actually, I do. I live on a very tight budget, hovering around the poverty line.  This particular supplement is very expensive.  And unproven. 

I feel pressured.

I feel disbelieved and dismissed.  She has just shown me how easy it is to cure joint pain, and she makes it clear that she thinks I’m not trying hard enough.

I feel demeaned.  My disabling illness has just been reduced to a trifling annoyance that is very easily cured as far as she’s concerned. 

I feel gaslit. 

I feel manipulated.

Most of all I feel rejected.  I’m not good enough. Being sick is no excuse because she knows she can cure my illness.  She thinks I’m lazy and need to try harder.  She doesn’t let a bit of stomach pain stop her, and she’s not going to ‘enable’ me. I’m a negative influence on her, and she doesn’t need that kind of vibration in her life.

She needs to raise her vibration and live as natural a life as possible and pursue her own happiness.  And I’m an impediment to that.  I’m like a big, black cloud in her life and she has tried to help me, but I refuse to allow my body to heal.

I’m stunned.  And hurt. And yes, more than a little angry.

Sorry for allowing my very real, and very incurable chronic illness to mess with your world view.  Sorry that my reality does not gel with your idea of what reality should be.  Sorry that I can’t cure myself, like you just did. 

Sorry for…ughhh. Why am I sorry?  Why did I allow yet another person to reduce me to tears and feel lousy about myself?

I feel sad.  Very sad.  My self-esteem plunges because my ‘friend’ does not want to be my friend at all. She wanted to cure me as easily as she cured herself.  She knows that if you believe in a cure, anything can be cured. She knows that the body has an innate ability to heal itself and all you need to do to be well is to provide the right environment – positive thinking, supplements, and yoga.

She has found me wanting. She has found me unpleasant.  She has found me not worth her time.

I feel like I don’t ever want to open myself up to this situation again, and so I keep to myself even more.  I punish myself for being sick and hate on myself for a week or so.

Then I stop spiralling and tell myself I’m imaging it, I’m overreacting, I just need to chill the F out and try again.

I send her a message of apology, that I haven’t been online much at all lately.  I tell her I’ve doing really poorly.  She responds with a “sorry you’re not doing well”.  I ask her if she wants to get together next weekend.

She ignores the message. 

I haven’t spoken to her in months. 

One day in the not too distant future I will notice that she has defriended me.

Any of that sound familiar? 

It has happened to me over and over again.   As I said, this is a combination of several people, all of whom have followed this basic script.  It makes it hard to trust people, hard to open up, hard to risk being judged, hard to set myself up for more rejection. 

Ofcourse not everyone is like that. I have some friends, mostly old school friends, who remain friends. Even though I don’t go to see them, even though I don’t message for months, they remain friends and they remain friendly. 

I follow their social media when I can.  I keep in touch when I can. I believe they know I care about them and hold them in very high esteem.  I believe they know how important they are, without their importance needing to be validated by a weekly meet up or phone call.

Being a friend when you have a chronic illness is tough.  In the beginning, I BROKE myself to make other people happy.  Then I almost died and not one of those friends took five minutes to check up on me.  I found out in a hurry that not one person whom I thought I was close to, really gave a toss about me. It changed me.   It would change you too.

And then I saw this meme:

You are not required to set yourself on fire to keep others warm

unknown

And it resonated with me. 

Friendships have to be give and take, unfortunately I have less to give.  I’m grateful for the people who keep me in their life anyway.  I’m giving 100%.  My 100% just looks very different to a healthy person’s 100%.

And to be clear, I don’t blame people who find me too much like hard work to be friends with.  I don’t blame them ONE little bit.  I AM hard work, though I don’t mean to be.  It’s not my fauilt, but I am hard to maintain a friendship with.

And life is busy. Everyone has problems.  Being chronically ill and living with chronic pain is not the only “bad thing” in life.  Many of my friends have huge issues, massive challenges that make their lives very difficult that have nothing to do with health and/or pain. 

Life is hard. For everyone. Yes, some people’s troubles are bigger than others, but we ALL have our challenges. We all have those moments when we just don’t feel like we can do it anymore.

And if you’re living a busy life, and you never have enough time for youself, and then you always have to come to my house, to sit on my couch, you always have to do ALL the traveling, I get that grates.  Its wearing.  It gets too much.

I get it.  I honestly don’t blame you.  Not one bit.

What DOES grind my gears is when people don’t want to have anything to do with me because of their fervent belief that my chronic illness and my high impact chronic pain (and my paralysed leg, and my hearing loss, and my vision loss, and my adrenal insufficiency, and my pituitary tumour, my arthritis, my neuropathy and…whatever…) are all within my control to fix.  That I could get better, that I could be healthy and pain free, if only I were prepared to do the hard work.

That, my dear friends, is bullshit. 

Grab a medical textbook, look up “incurable”.  Lots of things there.  Better yet, GOOGLE!  There is a wealth of medical information, even the sum majority of everything that humanity knows about medicine and the human body can be found with a quick google.  There is NO excuse for being ignorant and cruel to people living with serious illness.

But beware, if you choose to click on a wellness influencer’s page, who’s there to raise their own profile, or sell their latest book, and you choose to subscribe to their perverse world view on “sick care” and wellness, and you find yourself believing that health is a virtue and illness is a personal failing that none of us need accept, then you were never going to be my kind of person, anyway. 

I wish you well.  Well over there…away from me.

2 COMMENTS

  1. Well Hmm Trauma? I am think of what trauma happened to me that caused this? OK, I got it I just told Sheryl that Susan caused my RA. Sheryl asked who was Susan and how did that happen.

    Yeah I tell her, 3rd grade Susan. Oh Sheryl says. Well she called my therapist. I heard her say words like unhinged, unbalanced, and un several other things.

    More when I get out of lockup in a few weeks. 🙂

    • LOL! I love it Rick! You made my day :). You and Sheryl…not so much Susan!

      Blows my mind that people can perpetuate these beliefs, and not see the obvious logic error, the lack of consistency, the lack of evidence. The general population is losing the ability to think critically…and that is the real travesty here.

      Keep smiling, and keep making others smile, as you do 🙂

LEAVE A REPLY

Please enter your comment!
Please enter your name here

This site uses Akismet to reduce spam. Learn how your comment data is processed.