Any new diagnosis requires a period of adjustment, time to come to terms with the implications and a good support network around you – however, arthritis is particularly challenging.
The chances are it’s a condition you have to manage for the rest of your life, dealing with pain along with potential mobility issues and any damage caused. Virtually all forms of arthritis cause some type of damage and therefore it’s progressive in its nature, meaning the issues you are dealing with now may be greater the longer you live with the disease. Therefore receiving a diagnosis of arthritis is a difficult period for anyone so I thought I would share with you my top tips for people at this time, from personal experience having been diagnosed with numerous forms over the years.
1. Give yourself time to process the news
If you’re like me, you’ve probably had that experience of being a bit numb in the hospital when you’ve had bad news (whether its news about you or a loved one). You see people’s mouths moving but you don’t really hear the words. That’s ok and a perfectly reasonable response when you’re in shock.
Don’t beat yourself up if you draw a blank when asked ‘any questions?’, don’t stress if once you get in the car you suddenly have 101 questions you don’t have answers to, there will be plenty of opportunities. For now, take in what you can, talk it through with loved ones and get your head around the news in your own time.
2. Don’t Google anything!
I really can’t stress this enough. There’s a reason why everytime you search for more info on that minor symptom, such as a headache, it comes back as almost definitely being cancer(!). The internet is full of sites wanting clicks which means a lot of information is sensationalised and very little is backed by medical opinion or expertise. With all the amazing charities out there, such as VersusArthritis (Helpline 0800 5200 520), there really is no need to grab false information or jump to conclusions.
By all means use the web to find support communities and resources (such as this site) but don’t google symptoms or the latest herbal remedy fad, it’s not only bad for your mental health, it’s potentially dangerous.
3. Talk to friends, family and those in a similar position
Don’t make the mistake I did when I was younger and bottle it up, try and deal with it on your own or hide what you’re going through. A problem shared is a problem halved and if your friends and family have an understanding of your diagnosis and what your average day looks like, they can help support you and also recognise when you’re struggling.
Also, ask your Dr’s and local arthritis charies about support groups in the area that you could get involved with – my only word of caution with this would be, however, to make sure they are comparable to your situation. I was sent to groups with pensioners in when I was just a teenager and it made matters worse for me as until that point, I didn’t know what the ‘end game’ of arthritis looked like. If you are young, find a young person’s group, female with concerns about arthritis and starting a family, then perhaps a women’s only group etc.
4. Keep moving!
Anyone will tell you exercise is essential with arthritis. You’ll often hear me refer to ‘breaking the cycle’ with a flare and this is because as the pain rises, you tend to naturally rest more/move less and over time your weight will increase, putting more pressure on your joints and it becomes this vicious cycle that turns a one month flare into a major problem.
Now I’m a hypocrite as I write this as I currently haven’t been to the gym all week as I am in a lot of pain but I know I have to go by the end of the week to minimise the flare. Do what you can, when you can and allow time to recover for a day or so in between but keep moving, even if it’s a simple dog walk or washing the car. Don’t make the mistake some people do and respond to the diagnosis by taking it easy or changing what you could do perfectly well before you got the news – if you want to maintain the movement, you have to use it. Don’t wait for treatment to start or follow up appointments, your fight starts now!
5. Don’t be afraid to ask questions
Once you’ve had time to process the news, start writing down questions for your next appointment. Don’t be afraid to ask questions…lots of questions! The NHS is under enormous amounts of strain in the UK and no one will be your advocate for you. At a time when there are huge waiting lists for hydrotherapy, pain management clinics etc. you need to make your voice heard – don’t be afraid to tell your health professionals how you are feeling and the impact it is having on your life and if you want to know something, ask.
6. It’s ok to have a ‘feeling sorry for yourself’ day
No matter how positive you are or how you gloss it up, it’s pants as far as news goes – and that’s ok. Living with arthritis isn’t a walk in the park, you’re sore, tired, grumpy and one week you can be fine, only to have all your plans torn up because you wake up the next in agony. It sucks – therefore, why put more pressure on yourself to always be positive?
My rule is that I allow myself to have one ‘feeling sorry for myself’ weekend per month and perhaps one day a week during the really dark times (in hospital, off work etc.) Any more than that and my wife has permission to snap me out of it :). In my opinion, time to take off the mask and feel a bit miserable with the situation is healthy and normal, the key is only using it as a pressure release valve so that you know when to turn it off and crack back on with the fight.
Having a young family, I use the one weekend a month approach as a yardstick for how much I want it to disrupt my life – one lazy weekend feeling a bit low and binging on TV and snacks is ok, any more than that and it’s quality family time the disease is stealing from me and I won’t allow it.
There is a huge mental health strain with living with a long term chronic condition and this approach also works as a good early warning system to those loved ones around me – if they see me start to break my own rule, then they know I need their help.
7. Remember that everyone’s journey is different
This is an important one to remember – especially when thinking about your decisions and for the good of your mental health. Everyone’s journey’s with arthritis are unique. Do not compare, embrace your own path and focus on what you can do, not what you can’t.
If you don’t know already then you’ll soon realise if there’s one thing for certain about arthritis, it’s that it’s unpredictable. Next week you could be running a 10k or being run to the hospital. Don’t look at that person in the waiting room next to you and assume that’s your future – in fact, my whole motivation these last 25 years has been doing everything I can to ensure that it’s not!