I have had the most overwhelming response to my post ‘My Journey to diagnosis – Ankylosing Spondylitis’; I have been amazed that most, have been on a long journey to diagnosis, just as I have, with most having an 8 and a half year delay in diagnosis.
The National Ankylosing Spondylitis (AS) Society, have just launched a new campaign, Back Pain Plus, to help reduce this delay. Back Pain Plus is an awareness campaign by NASS aimed at professionals seeking to reduce the current delay in diagnosis for people with Ankylosing Spondylitis (AS) in the UK.
I wish this campaign the very best of luck and hope professionals can start identifying symptoms earlier for those who are fighting for answers and for those, who like me, are still trying to get their heads around the condition.
As someone who is newly diagnosed, I am still very much learning about my condition and still find it near on impossible to explain to people what it is, as well as explaining what this means for me and my life. From the feedback I have received, I know that I am not alone in this, so I have decided to write down the 10 things that myself and other people with AS, this invisible illness, would like to explain to you about being diagnosed with Anklyosing Spondylitis (AS).
10 things I would like to explain to you about my invisible illness, Ankylosing Spondylitis
Don’t misunderstand any of what follows, just because I have this condition, it doesn’t make me miserable, feeble or someone who is defined by AS and sits around moping. I am an incredibly active, positive, upbeat person, but I am also someone who struggles to explain the symptoms I experience most days and what this diagnosis means to me, so, I thought I would write it down in layman’s terms to give those who don’t understand, a better insight into AS. Chronic pain and fatigue are invisible, so let me explain as best I can…
1. I do not cancel plans on purpose.
Just because I can’t make all the dates thrown at me and I’m not meeting up every week, it doesn’t mean that I don’t want to be friends. I am just in pain, exhausted or simply having such a good day that I am finally able to get on with things.
I may cancel plans, but please don’t exclude me, I am still here. I do care about you and I do want to hear from you.
2. I may not look sick, but I am.
My illness is invisible, I don’t have a cast, a sling or broken skin; on the outside I am smiling, I am active, I am positive, but turn me inside out and you would see it all.
3. My illness won’t just “go away”, this is here for good.
I haven’t given up hope; I do believe there will be a time when I will have more answers or something that will help my symptoms, but this isn’t a bug, this is a lifelong illness.
4. When people ask me if I’m feeling better, I literally don’t know what to say.
If you want an idea of how it feels to wake up with this, I can only explain it as waking with that feeling you have when you have dreadful flu; there is simply no energy, your joints are sore and you just want to stay in bed.
Now imagine, that after days of fatigue and/or pain, just pushing through and doing the best you can, there is someone looking at you, expectantly, almost telling you rather than asking, “you’re feeling better, aren’t you?” or an irritated face, fed up of hearing how tired you are and that you’re still not feeling on top of my game…
So, when I am asked if I’m feeling “better”, I never know what to say; I worry that I am letting people down for being honest, or because I’m not miraculously any better, or because people will think less of me because I’m not feeling well. Chances are, most times that I am asked, I will tell you that I am absolutely fine and just press on… that’s just the sort of person I am.
5. Most of the time, I just need to know that you are there for me.
A hug, an extra hour in bed, a text message, a card, a knowing look can make me feel so much better. It’s not giving me all the answers and trying to “fix” me, it’s just knowing that you realise that I am going through something and you are there for me.
I have the most fabulous friend who turned to me the other day, in a room full of people, gave me such a kind, thoughtful look and quietly said, “are you in pain today?”. She knew that I was and just knowing that she was there for me and had the ability to read me and how I was feeling, made me feel like I wasn’t alone in this. It really is the little things that really matter when you have a condition like this.
6. If I am quiet or a little distant, chances are I am in pain.
Just because you can’t see it, it doesn’t mean I am not in pain. If I look bored, chances are I’m not, I am either completely exhausted and trying my best to take things in, or I am in a huge amount of pain and trying my absolute best to appear happy and “normal”.
Pain and fatigue are incredibly distracting, they are both emotionally and mentally draining. I always try my very best to be ‘on the ball’ and alert when I’m out socially or just with my family, but if I seem to be a little absent, please don’t take it personally!
7. Some days are great, others, not so great.
Some days seem absolutely fine, some are much worse, others are better than normal, and some, I can be feeling somewhere close to normal.
Catch me on a good day and there is no stopping me. Physically feeling good, is just about the best feeling in the World because it means I can actually get things done!! On a bad day, despite having no energy at all, I will most likely press on with my day, but I will be completely out of spoons (see below for ‘Spoon Theory‘) by late afternoon and have nothing left to give.
8. I am not lazy, I just need a lot of sleep and decent rest.
As a mother of a toddler, a dog owner and a wife to a man who works 6 day weeks, sleep and rest isn’t something that happens an awful lot in our house. If I am taking an extra five minutes to get out of bed in the morning, “being boring” having an early night, or I don’t fancy an all day/late night party, don’t judge me, I probably just need to rest.
Sometimes, I am just so tired from putting a lively, spritely face on things. Even if I am getting lots of sleep, I wake tired, so go easy on me, I’m trying my very best! I am absolutely not lazy, in fact, most people with AS, have to work twice as hard to simply accomplish most of the items on our ‘to do list’, the same things that most “healthy” people can complete in no time at all.
9. Thank you for sharing your ideas of how to “fix” me, but forgive me for not jumping around.
I really, really appreciate your thoughts and the time you have taken to read up on AS and the ‘wonder cures’. I realise that diet has a huge impact on this illness and general health, I know there are drugs out there that can help; all of these things I know and if they were relevant to me, I would have tried them out by now. Please don’t think that I am not grateful, I am, but I am also doing a lot of research myself and if there was a “quick fix”, I would be better by now.
10. I still have a life, interests, dreams and a lot of fun.
Just because I have this condition, it doesn’t mean that I don’t have a life, interests, dreams or a lot of fun. I have all those things every day; I work incredibly hard to live, work and am always busy and planning lots of things. There is so much bubbling away for us as a family, and personally, there is so much I want to do on a daily basis and I actually think I’m doing a pretty good job of things!
The Spoon Theory Explained
Christine Miserandino’s “Spoon Theory”, is a metaphor used to explain the reduced amount of energy for activities for productive tasks, as well as daily living that may result from chronic illness.
Spoons are a unit of measurement used to track how much energy a person has throughout a day. Each and every activity requires a given number of spoons, which will only be replenished as the person rests and “recharges”.
Most “healthy” people do not feel the impact of “spending spoons” for small, mundane tasks such as having a shower, getting dressed, or making a meal, so they may not realise the amount of energy expended on a daily basis by someone with a chronic illness.