Loneliness

Hi everyone, I'm new here. I'm in the process of being diagnosed with either Reactive or Rheumatoid Arthritis. I'm 29 years old, and no one in my family has ever had arthritis before other than osteoarthirits. I have arthritis in nearly every joint in my body and I have major fatigue.

I find it really painful and difficult to leave the house much at the moment, and I'm missing out on seeing friends because of this. I'm lucky because I work from home, and live with my wife so I'm not totally alone.

I think the loneliness comes from both not being able to see people, but also other people not being able to understand what I'm going through. Does anyone have any tips to be able to cope with this?

Some days I think I must be faking the pain or not trying hard enough because it seems like everyone else is coping. But the pain is so real and the fatigue and side effects from the drugs make life so hard. I never thought there would be so many simple things that I wouldn't be able to do.

Comments

  • Hi Mos

    I can totally relate to your situation. I have always had a level of fatigue that I never fully understood, in my 20's / 30's.

    But was able to get on and do most things despite having to be careful with my left knee as I was aware I was hypomobile since I started senior school and had to be extremely careful or it would dislocate, swell up and become extremely painful.

    When I was 26, I started getting very bad lower back trouble, that ultimately got me signed off work for 4 months.

    Over the years my Hypomobility became worse and I dislocated both my knees, hips & shoulders.

    When I turned 40, I stopped sleeping normally. I'm not sure how I managed to continue working full time in London and commuting 4 hours a day, with chronic Insomnia.

    But it wasn't until I turned 46, that I was diagnosed with Ankylosing Spondylitis which is apparently closely linked with Hypomobility and then in March 2023, Fibromyalgia.

    I had my first flare, in September 2022, (age 46) which was sparked by my first ever positive covid infection.

    I'm now 48 and have not been able to work for the last year. Due to chronic fatigue, chronic cognitive issues and extreme pain.

    I've very much experienced the same issues with friends and some family, who don't understand why I haven't been able to get back to normal and are bored asking if I'm alright for the last year.

    I'm often made to feel like I'm lazy or don't want to work or just being difficult.

    It's exhausting trying to explain it to someone who hasn't experienced it.

    I live on my own, dont have any kids and I've completely lost my identity & purpose. It's challenging. But you have to stay positive or you've lost everything you've worked so hard for.

    Stay strong

  • GarethJ
    GarethJ Member Posts: 8

    The fatigue is one of the worst parts. It's impossible to explain to anyone exactly how you feel. I'm desperate to give up working full time, as I think working less days would ease the fatigue and allow me some semblance of a normal life. But I just can't afford to.

    I understand what you mean about thinking you're faking it. I see others who are off travelling etc and think, if they can why can't I? Trouble is people always show their best days and it's not an average day for them.

    Most days I struggle to get out of bed and get dressed! Putting socks on is a painful nightmare of a job.

  • mosborn11
    mosborn11 Member Posts: 23

    Oh my gosh that sounds so hard! Yes it's so hard that people say things like 'get better soon' and it's like my ability to get better is somewhat limited!

    I don't know how you were managing to commute 4 hours with that level of fatigue, some days I consider whether it's worth making food because it's so tiring, I think maybe I'll just go to bed instead! I so get the feeling that people just think you're lazy or not trying hard enough. From your story, it seems incredible that you were able to cope for so long!

  • mosborn11
    mosborn11 Member Posts: 23

    Yeah I so relate to seeing other people who seem to be coping better. They seem to be able to live their life and achieve amazing things, whereas I'm congratulating myself when I manage to have a shower, or go through a day without needing a nap!

    I actually switched (pre arthiritis issues, but it turned out to be great timing) to working part time and freelancing the rest of the week. This means on weeks where I can work more I do, and at other times I can work less. It's an amazing priveledge to be able to do, but comes with it's own struggles financially. I'm quite lucky because I don't have any dependents (other than cats) so it's less of a heavy desicion than it is for other people!