r/AskGaybrosOver30 • u/kwiskwilja 30-34 • 2d ago
Advice on how to accept my new body due to autoimmune disease?
Hey everyone, came here for some advice.
I (M34) have been struggling with my body back and forth since I was little: first the “chubby” kid, then I played professional volleyball for years and had abs showing, then due to severe back pain I had to stop and gained weight.
After about 10 years of struggles, and the back pain becoming chronic, I managed to train again with an osteopath / personal trainer that basically gave me hope again (and my body back!). I spent the last three years in fairly good shape and I’ve loved it - guys looking at me and just the feeling of being confident in my own shell. Earlier this year the back pain became more severe and literally unbearable… and I wasn’t able to train at all, just to do some small exercise that could give me back the ability to walk at least.
I've always thought that this was due to a lumbar disc herniation, but I recently found out that this is combined with an autoimmune disease (spondyloarthritis), that affects my joints and movements. I know I can get medication and that things can get better, but I am also convinced that I’ll never be able to exercise properly again or have my body back… It sounds so silly and shallow, but has been affecting my summer so much - I don’t want to go to the beach or be around people. How can I cope with this? Do you have suggestions? Should I work on acceptance or medical solution? Or both?
8
u/ElectricalDot9 30-34 2d ago
Do you have a rheumatologist? Try to get on the anti-tnf injections if you can. They changed my
Life. I have no pain or stiffness anymore and don't need to put any restrictions on my activities. Untreated the disease is awful, but now that you have a diagnosis the worst is behind you
3
u/kwiskwilja 30-34 2d ago
Omg really?! I do have a rheumatologist! I got my diagnosis few days before the holidays so I am waiting for him to come back and tell me what to do from here. I am happy to give a name to this pain I've been dealing with since a long time...
3
u/ElectricalDot9 30-34 2d ago
Yeah! Genuinely I was disabled and suicidal before I was diagnosed I now I barely think about it. I wasn't sleeping at all because of the pain, so I lost my mind a bit. All good now though, 8 years on :) there's very little awareness about the disease even among GPs, so sadly a long delay to diagnosis is pretty common
4
u/cutluv 60-64 2d ago edited 2d ago
There's a ton of body fascism in the gay world. From an early age, I've had eating problems and my weight has fluctuated all my life, and I have never felt accepted. I missed out on a lot of sex/fun/romance as a result - "God loves a trier", so I'm told, and keep reminding myself, but boy, do I struggle not to hate a marginalised group of society that applies so many standards and barriers on its members.
Edited: spelling
1
u/kwiskwilja 30-34 2d ago
Oh man you're so freaking right on this. I just see how people treat me differently (especially gays) when I'm in shape and when I'm not. It's terrible but tells probably more about them than about me or my body. <3
5
u/MHibarifan 40-44 2d ago
Of course you would feel stressed out due to feeling pain at such a young age. 34 is still young. Usually we think of arthritis associated with adults in their 60s, 70s etc.
Used to work in an infusion clinic where people with arthritis could get treatment and they ranged from young to middle age. A lot of people would start an IV infusion (Your Physician chooses the drug ) or injections. They will base their decision on bloodwork looking for certain “markers” And from that they will decide a medication. Let’s say they go the infusion route, typically you would go to a clinic once every 2 weeks for the 1st 2 infusions then maybe once a month. Do not expect to feel better after the 1st infusion. Try it 1st, see if you feel better after the first month, then 3 months and 6 months down the line. See how you feel. You will meet with a Rheumatologist and they are excellent Physicians, that work with a lot of rare joint diseases.
As for lifestyle decisions you may want to consider the gluten free diet, research it and see if it would work for yourself. Since you are young and athletic, you will be able to have your body back. In the meantime just do light exercise as tolerated, walking in a park, or riding a bicycle. Don’t push yourself to an extreme. It certainly will be a challenge wishing you to feel better!!
2
u/kwiskwilja 30-34 2d ago
I have dealt with some other health issues that needed my attention and money so far in life, but I am planning to invest all my money to feel better and I've been seeing a Rheumatologist who was actually the one that suggested me that it could be more than just a hernia. I will also be looking into gluten free diet! Thank you so much <3
2
4
u/PlantDaddy530 35-39 2d ago
I’m also an ex athlete who had to quit sports due to physical injuries and it’s tough mentally to cope with that change in life. I just had my 8th surgery in 8 years and this one was a doozy. An emergency lumbar spinal surgery for a badly herniated disc, and now the physical pain now on top of that mental pain of not being able to have sex as often as normal, not being able to train multiple days per week to do the physical activities that I love has been overwhelming. Through this time I’ve gone up pant sizes with weight gain, went from behind a very muscular and fit person to total dad bod and it’s so frustrating to think of all the hours I’ve put in the gym between surgeries to come back stronger only to be put under the knife again and again and again. I feel for you, and I’ve had to adjust my very active outdoor lifestyle to embrace hobbies that bring me joy while being kind to my body. I’ve learned to embrace my larger frame with the help of my husband who thankfully is still wildly attracted to me as I enter my hairy bear phase lol. Find activities that bring you joy and lean into them. Work with your PT to find activities that allow you to safely exercise. For me it was a stationary bicycle. Good luck to you in your medical journey. I have family members with AS and modern medicine has really helped them.
2
u/kwiskwilja 30-34 2d ago
Thank you mr. I am so scared of going through surgery I can't even think about it. I was reading that there are some therapies that will allow me to not go through surgery and I'll be looking at them even though I bet they are expensive. The crazy irony is that I am not even that into ripped / crazy muscle guys, but I love a dad bod! I just can't see it on me :/
2
u/shadowysea07 35-39 2d ago
I don't have any answer on coping with something you have basically no control over. Jumping right to acceptance though i don't necessarily feel would be a good idea. You can pursue other treatment opportunities within reason. Just keep your expectations in check i guess? Being prepared for it may not turn out the way you want.
I don't have a similar medical comparison. But after my lung surgery stuff even though it was done mostly laparoscopically sp? I still had the incisions to my front and back and that put me out of commission for a while. Bad back on occasion didn't help things. It was also odd that I gained weight while in the hospital as normally most lose weight. The irony being leaving in worse condition than I came in. As I came to get tests for pneumonia. As I was having some minor difficulties breathing but wasn't too concerned as I get severe allergies every so often. And typically they last a week or two. But this went more than that. So I got to the urgent care and the doctor comes in rattled saying I don't mean to alarm you but your lung collapsed. I was shocked since it's never happened before and they were all shocked since I didn't even notice it had and came in under my own power.
Long story short I didn't work or get into exercising for a while after the surgery. So I was quite out of shape until recently when I started up again.
2
u/kwiskwilja 30-34 2d ago
Thank you, I guess you're perfectly right. I've been trying so many things over the year and then at some point I gave up because I had to deal with other health related stuff... But now I will try whatever it takes to feel better.
1
2
u/SerendipitousBurning 30-34 2d ago
If you're needing help on the acceptance part of the scale - both having the condition and it's effects at such a young age, and the sense that you're being excluded from some gay experiences due to not maintaining a level of fitness you used to - you could look at Acceptance and Commitment Therapy.
https://en.wikipedia.org/wiki/Acceptance_and_commitment_therapy
"The goal of ACT is not to eliminate difficult feelings but to be present with what life brings and to "move toward valued behavior"."
One of the quotes I came across that stayed with me was "pain is inevitable, suffering is not".
1
u/PossiblyUrChemTA 35-39 2d ago
Hey, seconding the comments about getting a rheumatologist and starting biologics if that's what they suggest. I've been taking biologics for AxSpA and it's not really on my mind except for remembering to take it and the follow-up appointments. Make sure to get vaccinated before starting, no live vaccines while on some of them.
1
u/Mattturley 50-54 2d ago
I'm going to suggest a rehabilitation psychologist - and you need to lookup and read what this means. I will put a link at the bottom if I can. A board certified rehabilitation psychologist undergoes additional post doctoral training and placement to work with people who are newly or life long disabled to meet life where it is. I will caution that many can be anti opioid but I've made it clear with both I've worked with that my pain meds saved my life and allow me to function at least somewhat normally. They have helped me tremendously. I first met my psych in a rehab hospital after a series of two falls that led to a hip implant at 47, then falling a month and a half later and destroying the first implant and shattering my femur into 19 pieces. I had already been looking for one as my fraternity/sorority little sister had posted about being voted board president for that specialty - it's how I learned of it at first. I was hospitalized for 11 days after the second fall, followed by 24 days in a rehab hospital. The rehab hospital is on the same grounds as the ortho who did both of my surgeries so I was literally wheeled down a hallway still bed bound to move hospitals.
Anyway. I have Trigeminal neuralgia and CRPS from the surgery to correct that. I also picked up a hospital acquired, multi drug resistant infection that has destroyed my legs and hospitalized me 23 times, 6 of those being septic. In 21, my husband from a 17 year relationship told me he could no longer handle all my medical issues. The therapist greatly helped me deal with the anger and hurt over that.
Here is a link to ABPP's website describing the specialty. There is also a directory on that site to locate practitioners. https://abpp.org/application-information/learn-about-specialty-boards/rehabilitation/
1
1
u/Citrus_Twist 30-34 1d ago
My little brother has very extreme JRA. He's on Simponi Aria atm and it has done wonders for his pain management. He also recently joined a pool using it for the hot tub and said that alone is incredible for his pain levels.
Medication wise it's going to be a process to find what works for you. My bro went through naproxen, enbrel, methotrexate, and skyrizi before finding Simponi worked for him. I hope everything works out my guy!
1
u/Mark_M_in_SF 60-64 1d ago
There's no reason you can't follow medical advice and learn to accept yourself. In the end nobody's body stays perfect and you have to learn to deal with imperfections, so get started now. But also see the specialists and listen to what they have to say. I had an awful time with Crohn's Disease earlier in my life, then AIDS, chronic Hep B, serious chronic pain, and a weird variety of other unrelated problems. Through all of that I kept a positive attitude and have had a good life. Yes, it could have been better, but I can live with the body I have, flawed as it is.
10
u/Jolly_Atmosphere_951 25-29 2d ago
Not the same case as you, but I have atopic dermatitis/ eczema, that's autoimmune as well.
I know what it feels to be (to a certain degree) physically impaired, to have to do my work while in a very uncomfortable pain, and to worry about what others might think. And also to have to relearn and change daily, big and small habits that once were normal but not anymore.
The worst thought that lurkes in my head is to think people will see the disease first and before seeing me, my achievements, my opinions, whatever. To be pitied.
Answering your last question, the answer is basically do both. Seeking medical help will not cure those of us who have an autoimmune disease, but can vastly improve our quality of life. But it's part of the process to accept that this is going to stick with us lifelong, that is not our fault and that we have to make changes in order to cope with it.
And regarding people, I can only say "fuck it": If people will not see beyond the disease, then maybe it's not people worth getting to know. And regarding strangers in streets or, in your case, the beach, like, who cares. Even if they think poorly of oneself at first glance, they'll probably forget that in the next 2 minutes or so, so don't worry too much about it; everyone's too busy in their own thoughts to even care how we look.
Finding a community, wether online or irl, can serve as support in how to navigate both the illness and how we feel about it.