Just because I don’t look sick, doesn’t mean I am well

I have to say that having bad joints is definitely and INVISIBLE ILLNESS! Yes there are days when I am limping and there are days where some of my joints try to become radiators but on the whole to my friends and family I look “normal”, or as normal as I can be (I admit I am a bit weird).

I try not to let on to people that I am in pain because I really don’t want to draw attention to the fact that I live in chronic pain, but also because I don’t think that I can cope with the comments that people who aren’t in CHRONIC PAIN say… “Oh my knee gets sore sometimes too”, “my [insert a ridiculously distant relative] has that too and they are fine”, “you don’t look sick” and the list goes on.

Sometimes, to see how someone actually feels, i.e are they in pain, you have to look for the more subtle clues. For example, when my hands are sore my handwriting can be almost illegible.

20130522-225128.jpg
[the writing on the left is my writing today, it clearly shows that something is going on especially when you compare it to my normal writing on the right. Unfortunately many people miss the subtle clues to illness and so they can be pretty oblivious to illnesses that are all around them]

I did get quite annoyed at some of my friends today, I try not to because they can’t understand, but sometimes everything gets a bit much. We were in Poundland, a shop that sells everything for Β£1, and straight away I was drawn to all the medical supplies. This was mainly because I am in desperate need of some more plasters (I like to have a large stock since you never know when you are going to need them) and I was also needing alcohol wipes and some latex-free disposable gloves. So I was basically wanting to re-stock my first aid kit (I carry around a makeshift kit of bits and bobs that have and might be of use in emergencies). However there was a tube of ibuprofen gel which works quite well when my joints are tender, although taking ibuprofen pills do nothing for me. I was going to buy this tube of gel but my friends started nagging saying that I don’t really need it etc.

That’s especially what irritated me, they presumed that because I wasn’t limping or complaining I was not in pain. WRONG! I was in a fair amount of pain, probably about a 6 on the scale. My thumb was extremely stiff, my knee was still red from overdoing it at the weekend, my ankle was puffy and my hip was also a lovely pink colour. Just because I do not look sick, does not mean that I am well.

Anyway this resulted in my buying the ibuprofen gel from a different shop to avoid the nagging of my friends.

If friends can’t understand then really who can? I’ve been very fortunate in the fact that I have found a really good community of people on Facebook and twitter who are going through a similar situation to me, which means that I do have people to speak to. And these people understand how “blunt” people without invisible illnesses can be. But I think I would do good in reminding myself more often, that many people without chronic illnesses, have never seen an invisible illness (hence the invisible) and so can not relate to how we feel.

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8 thoughts on “Just because I don’t look sick, doesn’t mean I am well

  1. That’s definitely one of the most frustrating things about having an invisible illness. People don’t believe you or think you’re faking it (including doctors!). Or even if they do believe you, they make insensitive comments. It can be really hurtful when even those closest to us don’t understand! That’s why I think it’s so important to make friends with other chronically ill people, because it’s too lonely otherwise.

    1. Couldn’t have said it better, I feel really lucky in that I have you and everyone else on Facebook and lots of people on twitter who have a whole host of invisible illnesses too.

      It is a shame though, that invisible illnesses are pretty common yet no one seems to know they are there

  2. I’m so sorry you have had to deal with this at such a young age. I was lucky to not be diagnosed until I was in my 50’s, although I think it was there in my 40’s, but I just chalked all the pain up to “aging”. Glad you have found such a good support system through FB & Twitter. It’s been wonderful for me also!!!

    1. Thank you Dawn! I’m sorry you’ve been diagnosed with RA, I hope you are getting the right treatment πŸ™‚
      You’re right! The support of these groups are amazing, especially because they have been through pretty similar situations πŸ™‚
      As for age, I’m lucky that I started to get symptoms aged 11, I know many kids who were diagnoses at 1 and 2 years old.

  3. Sadly, the more you soldier through and try not to make a fuss about the pain of invisible conditions the more people think you ARE making a fuss if you so much as mention it. I’m sure if people could walk in your shoes for even ten minutes they would never make another dismissive remark again but fortunately for them life doesn’t work that way.

    1. I think that, unfortunately, that is the way of life. I think people tend to keep their battles with pain quiet and so it seems like there isn’t much pain. It would be good if people wouldn’t make the comments but I agree with you, it isn’t possible for people without these sort of illnesses to know what it’s like.

  4. Hi…I’m curious about your RA diagnosis…
    I have severe allergies and allergy induced asthma…I’ve also had joint pain for several years…I was tested and they found the ‘RA factor’ in my blood and thought I had arthritis. Especially in my hands – I can only open them so far without pain….but then I spoke with an allergy specialist and she said that the underlying cause for a lot of symptoms is allergies….they can cause swelling in the joints that mimics arthritis. It kind of all made sense after that.
    So I’m curious how they determined your dx.

    1. Hey Christine, thank you for your comment!

      I haven’t actually been diagnosed yet, I’ve been hanging in the world of the undiagnosed for about 7 years now regarding my joints. But what initially got me sent to a rheumatologist was that even though I was diligently doing my physio, and fair few rounds if intensive physio, my joints were getting more and more sore so in an attempt to work out what was going on I was sent to a rheumatologist.

      My RF is positive too, which is why I am being monitored by a Rheumy… Because although the presence of the rheumatoid factor indicates RA, it doesn’t always mean that the person has RA. So basically some people with the rheumatoid factor could have no disease what’s so ever. That’s what makes it so hard to diagnose in the more ambiguous cases.

      However I think that if you are struggling so much with your hands, and you are getting swelling and you are RF positive that is a good indication to see a rheumatologist and see what they says. Yes it is all good and well seeing an allergist, who is an expert but they are an expert in allergies/asthma etc but not in rheumatic conditions. And although both allergies, asthma and some forms of arthritis are caused by an overactive immune system, it would really be better for you to seek advise from someone who is an actual expert in joint diseases.

      I really hope you can get some answers quickly Christine! Feel free to comment back or email me (see the contact me page) if you have any other queries or would just like to stay in contact!

      I wish you all the best,
      Jenni!

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