Chronic Illness & Mental Health: An Inevitable Combination

JoelVsArthritis

My name is Joel and I have lived with arthritis for most of my life. This started with a juvenile form when I was 11 years old, then Ankylosing Spondylitis in my teens. I was finally diagnosed with Psoriatic Arthritis in my 20s.

In 2019, I started a blog to share my experiences, raise awareness and to be an advocate for those with arthritis and other autoimmune conditions.

Pain gets its claws into everything

Living with any chronic condition is tough. It’s relentless, tiring and can be all-consuming. Often your plans are dictated by the behaviour of the disease rather than your desires. From the small things such as your plans for the day, to heavily influencing your life story. For instance, your career choices.

For me, alongside the uncertainty of arthritis, it is the pain that has such a big impact. I have had years in remission with completely pain-free days. However, like during my current flare, I am in moderate to severe pain most days and nights for many months. It’s exhausting.

Pain affects your mood, sleep, relationships, ability to perform your job, basic tasks around the home and even your ability care for your children and loved ones. Each day I have a balance to strike between pain management and function. It’s about trying to manage the pain, whilst retaining a level of lucidness, depending on my responsibilities for that day. It’s a constant mental struggle and I tend to be my biggest critic.

Impacting your mental health

Inevitably, living with a disability and high levels of pain does take a toll on your mental health. If the constant pain doesn’t wear you down, the lack of sleep, loss of confidence or worries over job security and finances will. However, this is completely understandable and reasonable, I just couldn’t see that over the years.

I spent far too long believing that my poor mental health was a weakness, that I should have learnt to cope better or I somehow wasn't strong enough. I was embarrassed that I still couldn't manage at times, despite having my condition for years.

It took being a parent for six months to realise that I had lived with numerous episodes of depression, anxiety and low confidence over the last 25 years. Also, they all coincided with flares in my chronic condition.

I used to be able to play sport, the guitar and run. However, during a flare up I suddenly had no hobbies or social life, with this happening in a matter of weeks. I went from playing rugby to not being able to walk unaided some days within a month. Not including the aforementioned factors of chronic pain: being off work, lack of sleep and so much more.

The real strength is knowing when to ask for help

Becoming a father changed my perspective on life. I sought help from my GP and local wellbeing service. I learnt that it wasn’t what I couldn’t do that mattered, but what I could do in those periods of disability. The simple things with my son. Time spent as a family. More importantly, it taught me two appreciate what I accomplished when I was in better health. I completed RideLondon 100 and ran the Great North Run for charity. These are not the actions of a weak person, but the mark of someone who pushes back the boundaries of the hand they have been dealt with. I make the most of what I can do, when I have the capabillity to do it.

I wasn’t weak, I was surpassing expectations and anyone would have difficulty in adapting and living with the pain and periodic limitations. Everyone has a limit, it’s recognising and knowing what to do when you approach it that matters.

In my experience, chronic illness and mental health are intrinsically linked, but with the right support, mindset and knowing when to be kind on yourself can help. It’s ok not to be ok and knowing when to ask for help is a sign of strength.

If you would like to read more of Joel’s story, visit his blog or follow him on social media @joelvsarthritis.

What have you overcome with your disability? What are your experiences with chronic illness and mental health and what are your tips for managing living with a long term health condition?

Ails

Hi @JoelVsArthritis, this is a fantastic story and so inspiring!  Thanks for sharing with us.  Well done on all your accomplishments!  You are definitely challenging your Arthritis and that is only to be applauded.  Everything you say on here is so true and it really is ok not to be ok.  

I have Spina Bifida myself and over the last few years my condition has got worse so I've had to reassess what best suits me to do in a day with my pain and not expect too much of myself if I can't do something I've set my heart on doing.  Not being able to do things at times certainly does get you down, but it is important to focus on what you can do and try not to let what you could do in the past get you down too much, although that is often easier said than done.  You really just have to take every day as it comes I think and definitely accept help from others and just be kind to yourself.  

Thanks again for this great piece and what a cute baby you have!  All the best. 

cracker

@JoelVsArthritis, thank you for your post. I have been feeling angry at myself for not being able to do so much of.what I want to do. 

A friend came to visit today. She is the one person who has been with me at My worst times. She is healthy, talented and kind and competent.

I so wanted to be her, or at least be able to do what she can do. I'm not and never will be. I try not to let her know how limited I have become.

Your post inspired me to go on as I am, or should I say to accept how things are.?

How do I cope? One day at a time and being grateful I can hang out my own laundry even though it hurts and takes a long time. By realising that for me, that is a major accomplishment.

Thanks again.

April2018mom

This is a lovely story to read. I also fully concur with you. When my son was in the NICU as a tiny infant with a birth defect I doubted that I could have survived without prayers and the several kind offers of help that we received after the diagnosis day as well. He was prenatally diagnosed with open lesion spina bifida at a routine ultrasound appointment when I was halfway along. That was a complete and utter shock to me. I had not heard of spina bifida at all so I was blindsided by the words. 
Even if it is only a cup of tea, a good luck card or money that still counts. I also appreciated genuine concern. It was really a hard time. But what made it easier was knowing that other people cared. I had numerous people pray for me as well. In addition to that many other people who I had previously never met until then including his doctors and nurses showed us compassion and kindness after I delivered.
On the day of his birth, there even was a whole team of doctors already waiting for him at the hospital which I was going to be delivering at. I delivered at Children’s Hospital since it was easier. I was on the labor floor in a private room. With the right type of care and support my faith in humanity was restored promptly. 
It really makes a difference, doesn't it? I received so many prayers from my church friends in the week leading up to the birth. Not just for me, but also for my family. Grateful is a major understatement when it comes to describing my feelings. People cooked for us and wished me congrats on my two. 
I'm thankful for that whenever I reflect on his birth. It could have been far worse, this is what I silently choose to tell myself on my bad days. Of the week after his birth, a distant memory in my mind I still vividly recall the kindness most of all. I remember thanking everyone via email. The day after his birth, a team of doctors got to work saving his life whilst I waited for news in my room as I bonded with my daughter. My partner sent me updates whenever possible.
Kindness is important. It makes life so much easier I feel. 

JoelVsArthritis

@Ails Thank you so much for reading and your kind comments. I try to be as positive as I can whilst not masking the reality of everyday life with my chronic conditions. I must admit, like so many, the last couple of months have been difficult to stay positive, having not been able to leave the house since the start of March and try and look after my son without the use of childcare. I hope you are getting by ok at this difficult time?

It's always a chicken and egg scenario with my chronic illness and mental health but they are certainly intertwined and I think everyone's mental resilience is being tested right now.

Stay safe.

JoelVsArthritis

@cracker Thank you for taking the time to comment.

So pleased to hear of your new approach. Don't be too hard on yourself, it's not a switch you can simply turn off. I still have plenty of days where I grieve for what I once was. Especially when I think about friends I have lost touch with or benchmarking against something as silly as Facebook memories that remind you what you were able to do a year or so ago.

It takes a lot of time and effort to turn those memories into positives - accomplishments of what you were once able to do. It's why I turned to writing. I hadn't written in years, since I was a child, in fact. But it was one thing I could still do, so when one door closed on sport and physical hobbies, I tried to open a new one to feel like I am accomplishing something. I hope one day that it's the writing that my son reflects on with pride and what I once did physically is secondary.

Whatever you do, try not to benchmark against others - I have wasted far too many years being miserable comparing when the playing field for that particular activity isn't level, Find your niche/focus and own it.

All the best and stay safe. Thank you for reading.
Joel.

JoelVsArthritis

@April2018mom thank you for the message. Sorry to hear what you went through, it must have been so difficult. Really admire the positives you took from that situation.

I often get asked if I would change my health and I always say no. I might not like it. It makes me miserable, difficult to live with at times and every day is different but I'd never change it because it made me who I am. It's those experiences that made me determined, compassionate, sensitive and stubborn. I'd rather have a story and be an individual than one of the herd.

It also makes you appreciate the good days more, as it sounds like you do.

I hope your son is well and doing ok and I'm sure your kids appreciate everything you went through and do for them as I do my folks. Becoming a parent made me realise just how much my health as a child must have put them through.

Stay safe.
Joel.

Ails

You are welcome @JoelVsArthritis.  Yes, it is a very challenging time just now and not leaving the house and looking after children must make the challenge even tougher, but it sounds as though you are doing great.  

I'm doing ok, thanks.  Just trying to keep busy.  Please stay safe and well.  All the best. 

jasmineirani

Is there another meditation video for today because I can not see it on here. I really thought it helped yesterday. Am I in the wrong section. I am feeling much better today and trying to keep myself busy thoughtout the day. 

pollyanna1052

Ails

Hi @jasmineirani, can you please let us know where you found the previous meditation video which helped you?  Could it been a link sent to you by @chiareds by any chance?  So glad that it helped you and you are feeling better about things today.  I don't think we have a similar video on the site, sorry!  How has your day been? 

Grinchy

Thank you for your inspiring story Joel, i wish you all the best in the future, and everyone else going through chronic pain, i hope you have support, take care my friends

jasmineirani

I am not to sure where the video came from but when I first came upon this I thought it would be a good idea to do it. No worries if there isn't another video. I thought it just might help me if there was one every single day and that I could do it every single day. 

Ails

Hi @jasmineirani and thanks for your reply.  How are you today?  I hope you are having a nice weekend.  I had a wee look online and found this article giving 5 meditation videos, if you want to have a look -

https://www.goodhousekeeping.com/health/wellness/g4585/meditation-videos/

I might actually try these myself as they look good and I'm sure you will find others like this on YouTube too.  Yes, you are right, probably doing something like meditation is a really helpful thing to do every day, especially during these challenging times.  All the best. 

jasmineirani

Thank you for the link I should do it every day. 

andrewjohn

Hello everyone. I am sorry I can't remember all your names, though when I read of your problems, mine seems to pale to insignificance. Although to me, it is quite a big deal, and something I have had to learn to live with. I suffer with Stenosis of the lower lumbar spine, brought on by older age unfortunately. However with mine, it is a constant and chronic lower back pain, and just like Joel, and I hope I have spelt the gentleman's name right. It is the narrowing of the lower spinal canal, caused by arthritis, that pinches on the nerves, that at times, especially if I put a load on my back, I get terrible pins and needles up my back, and down my legs, and if I am going to walk anywhere, I have to make sure the surface isn't undulating, which is pretty hard to find anywhere really.

And I agree, it really does make a sufferer feel depressed, especially after leading such an active life, with my problem, now governing I do on a daily basis. And although I am on medication for it, it's here for the duration, as I have degeneration of the spine in that area. Unfortunately, I don't get that much support from my wife, as there is only the two of us, and only me that drives, and she has a vulnerable and infirm cousin living not far away, and even though I am feeling rough, she will say, oh you will be alright to drive me over there. Anyway everyone, take care of yourselves, and keep up with the good work Joel. Stay safe and keep well: smiley

Caz_Alumni

Hello @andrewjohn

Thank you for your post. Glad to hear that you read about @JoelVsArthritis's experiences with interest, but I'm sorry to hear about your own difficulties with arthritis. 

Like Joel, I also have psoriatic arthritis - and like yourself, my arthritis is controlled with medication. I think you're right in what you say, that sometimes it's difficult for others to understand how arthritis can affect us all in lots of different ways - whether that be in terms of pain or fatigue or how we're feeling about things in general. 

Might I ask - are you in fairly regular contact with your doctors and have you spoken to any of your medical team about how your arthritis affects you? They might be able to offer you some additional specialist support in relation to your arthritis - if they haven't already done so, of course. 

Thanks again for your contribution to the community. Do keep posting and I look forward to chatting with you more in the future.

@Caz_Scope

andrewjohn

Hello Caz.

Thank you for reading my post. The last time I spoke to a  doctor, was in fact at LCH in the Orthopedic Outpatients, nearly two years ago. And I had a copy letter, one of which, went to my GP, and it basically said, that they don't want to see me again until next year. The appointment this year, was by phone. And although they upped my medication, and put me onto Pregabalin, it still isn't up to the job, as it is meant to mask or deaden the nerves affected in the lower lumbar area. Though unfortunately, that is not the case.

So I pay out for monthly physiotherapy sessions, which do help somewhat, though the nagging pain comes back again.

Thanks again Caz, for taking the time to read my bit of history, and I do hope that the medication you take, does in some way, help to alleviate the discomfort you are feeling. Hopefully, chat to you again soon. Take care, stay safe and keep well.

anthy

Hi I also have chronic Ankylosing spondylitis my back and neck have now completely fused I am wheelchair bound and my mental health is the worst its ever been  I have always tried to be upbeat.I found that people I thought were friends just disappeared because I  couldn't do the things they could or that I had to cancel because of the pain I'm in it never goes away I've tried every medication that the consultant put me on there's no more so just trying to deal with the horrendous pain daily any advice

Tori_Scope

I'm sorry to hear about the difficult situation you're in @anthy. Have you been able to access any support for your mental health specifically?

It must be difficult to feel as though you've exhausted all of your options in terms of medication. Have you tried any other forms of treatment, such as physiotherapy? The NHS website names a few types of physiotherapy recommended for AS, including:

• a group exercise programme – where you exercise with others

• an individual exercise programme – you are given exercises to do by yourself

• massage – your muscles and other soft tissues are manipulated to relieve pain and improve movement; the bones of the spine should never be manipulated as this can cause injury in people with AS

• hydrotherapy – exercise in water, usually a warm, shallow swimming pool or a special hydrotherapy bath; the buoyancy of the water helps make movement easier by supporting you, and the warmth can relax your muscles 

Have you tried any of these?

Unfortunately, many disabled people have similar experiences of losing friendships due to their condition. I hope that the community can be a good support network for you Have you had a look to see if there are any groups in your area that are accessible or inclusive of people who experience things such as chronic pain or mobility problems?

anthy

Tori Scope Thank you very much for your advice I have a lovely lady from mind helping me with my mental health I have tried most of the above it did help but now I have been on all the injections for AS but stopped working after a short time so I'm having to start from the beginning