It’s Invisible Illness Awareness Week, and as you may know, I’ve got my share of issues (medical!).
I don’t hide my conditions, but I also try not to show them or talk about them too much – though this can be hard at times when all you want is someone to understand.
I have so many friends with their own invisible illnesses; there are so many different battles going on, and we all know that it is difficult to understand something you can’t see, or have never felt. Unfortunately lack of knowledge often leads to judgement, negative comments, and generally lack of help when needed.
As part of invisible illness awareness week, each day I’m going to share a different struggle I face to hopefully encourage a bit more understanding of the problems that come with these illnesses and conditions.
Today I’m struggling as I have a cold. This sounds normal but because of my conditions the symptoms of everyday illnesses like this can be so much worse:
– My immune system is lower so being ill completely knocks me. I feel so weak and drained
– My body already aches so this adds to the pain, and with chronic pain your nerves basically work overtime so create even more pain
– I’m already fatigued so while my body fights this as well simply being ‘tired’ is a distant memory
– Despite this, sleep is pretty much unachievable (there’s a reason I’m writing this at 2am). Sleep is usually difficult anyway with pain and medication side effects, but add coughing, sneezing etc and the only hope of a restful few hours is that the fatigue gets so bad your body gives in (a restful night simply does not exist)
– My body doesn’t have the energy (or rest) to fight illness like it used to so even the runny noses and sore throats are heightened
-Taking cold medication is complicated. I have to check what doesn’t clash with my regular meds, and with more to keep track of I am more likely to miss or be late with some of my tablets
-Feeling rubbish triggers a bad day for depression and anxiety!
I’ve now missed 2 days of work and a rehearsal for this cold…it sounds pathetic and I feel so bad – but this is so much more than a cold!
Today has been a write-off. I’ve spent most of the day sat (or led) surrounded by tissues, trying to doze, either completely zoned out or fighting tears of pain and frustration, with the tv on as a distraction and only moving to get water or tablets. I couldn’t get dressed. I couldn’t go to the shops for milk (despite wanting a milkshake or hot chocolate so much!). I couldn’t even call someone to chat and cheer me up as I had very little voice.
The worst part is being unable to explain how bad it is to others, or trying but knowing they won’t understand. Feeling judged because you’re cancelling…because you have a cold.
Today’s biggest struggle has been loneliness.
It’s easy to think this is linked to depression, but actually it’s an effect of all my conditions, and most people with invisible illnesses experience loneliness to some degree.
There’s a difference between simply being around people and having people around who understand and you can talk to. Have you ever been in a room surrounded by people but felt totally alone? That’s a regular occurance for me and others with invisible illnesses.
Having any type of illness or condition can affect your social life. There are times when you can’t go out or can’t join in, and times when you have to bail on your friends. It takes so much more effort to get up and get out, and even when you do, pain and symptoms can mean you don’t enjoy it. You find yourself spending more and more time at home on your own. This can take its toll on your friendships and people can grow distant. Friends who used to be close become those you see every few months at a special occasion. They’re still your friends, there’s no fall out, you just can’t confide in them or chat one to one like you used to. It’s also easy to lose friends through misunderstanding of your condition, which is particularly the case with invisible illnesses. On the flip side, you learn to truly value those who stick with you during the difficult times.
On top of these social difficulties there’s the guilt of cancelling, the feeling of not wanting to be a burden and the self consciousness of being an annoyance, which can all cause you to withdraw. It’s all too easy to think others will have a better time without you – often not the case but still a thought that’s hard to fight when you’re feeling low. It’s a spiral of negativity.
Because of all these, even when you have good family and friends around you it’s easy to feel alone. I have friends with wonderful families who still feel alone in their struggles. It’s harder to find things in common with others, and even harder to find others who can relate to how you’re feeling.
Today I was home alone, unable to go to see anyone, no-one able to come to see me…(even if they were, you feel you can’t keep asking). Everyone has their own lives and so this is the norm most days. No-one to talk to, just my own thoughts going round and round. Eventually some messages from friends gave me some virtual company for a while and lifted my mood (so thankful for phones and internet!).
The important thing to remember is we are not actually alone. There are so many people going through similar struggles. Even those friends who arent, who don’t always understand and can’t always help, can still care.
To all those friends and families, never underestimate the power of a visit, an invitation, a phone call or simply a message. It can mean the world to someone who feels alone.
One of my biggest daily struggles is pain. With my joint problems I get aches and sharp pains as standard. This can make moving and doing things difficult, and usually the more I do the more I hurt.
I also have chronic pain, which, in simple terms is when my body basically doesn’t process pain signals correctly. It creates more pain chemicals and my nerves work overtime sending more pain signals. This all means that I can get random aches, shooting and stabbing pains, tingling, and hypersensitivity in any area of my body. There are no visible signs to any of these pains, only I can tell how bad they are.
My pain levels vary throughout the day as well as day-to-day and can be affected by so many things such as activity level, weather, diet and amount of sleep and many more. Although there are known triggers, bad pain days and flares can also be unpredictable and therefore harder to manage.
One day I can be up and about doing all the housework and going for long walks without much problem, then other days I struggle to get out of bed and can’t stand for long because of the pain.
Pain is tiring and frustrating, even more so when it’s invisible and people can’t understand what you’re going through. The unpredictable nature of chronic pain makes it harder to explain how much it affects you as it varies so much.
It’s hard not to let it affect your mood, something I’m particularly bad at, because pain is just, well, such a pain!
Short but sweet, the struggle of other’s opinions:
So many people assume that when we talk about our conditions we want sympathy. This is not the case, all we actually want is some understanding and patience.
We dream of being able to postpone a plan because of our illness and not being judged for it.
We long to be able to take time for ourselves to recover and not be seen as lazy.
We can but imagine a time when we can talk about how difficult things are and not be accused of exaggerating because ‘we look fine’.
Yes at times we may run out of fight and have a self-pity party, but we don’t need others to join us. It’s just a breather. We appreciate someone who helps us back up, but all we need of everyone else is to be patient while we get there.
Saying ‘I understand’ and meaning it is about the nicest thing you an say to someone struggling with an invisible illness.
I often get very vivid dreams and nightmares.I’ve always had this to some extent, but it is worse with my illness.
It’s also a side effect of some of my medication – because they’re stimulants that can cause your brain to be more active. My dreams and nightmares are worse since being on the medication but it works so it’s worth the sacrifice. I have tried alternative meds but they were less effective and my conditions got worse.
It’s one of the common struggles of chronic illness, finding the right medication and balancing positives and negatives. It’s always a long journey and sometimes the best outcome isn’t that great. You just get used to the effects as part of your life and manage accordingly.
Side effects are just one more thing to juggle with any illness. You just have to manage the best you can. I need to get longer sleeps to make up for poor sleep quality, fill my evening before bed with distractions (a personal Fave is Disney films!) and accept that some days I will wake up scared and anxious so allow time to get over that.
Also with side effects it’s good to remember it could be worse!
The struggle of saying no.
Saying no can be difficult for anyone in certain situations. When your reasons for saying no are not visible it is even harder. When people want and expect you to say yes, how do explain saying no? When people try to persuade you otherwise, you feel the need to justify it but nobody wants your life story in response to a simple question.
Some examples of when I may need to say no:
- Want to join in? (something active)
- Can’t you stay longer? (especially if it’s getting late)
- Can you just help us move/lift this?
Often people make a judgement on what they see, and don’t understand why you are unable to do certain things. I’ve lost count of the number of times I’ve said ‘I can’t actually do that’ or ‘I need a bit of a rest/sit down’ and am met with the response ‘come on, you’re young and fit/healthy’. I hate responding to this; how do I explain that yes I may look it but I’m not? How much detail do you give to justify your response? Sometimes people argue because they can’t understand why you’re saying no, so you give more and more explanation.
The worst is when someone is counting on you to say yes, for example they need a certain number of people. Your ‘no’ can make the difference between something being able to happen or not. It can be so hard not to push yourself to say yes, and others may pressure you to, but sometimes you just can’t.
It’s also horrible when you want to say yes! Sometimes you are asked to do something you would really enjoy, or want to help with, but either your body (or mind) won’t let you, the pain will be too much, or you could physically do it but will suffer as a result. It’s so hard not to push yourself too far. Sometimes I do, and I know others do too – it’s human nature!
From favours to social events, cleaning to outdoor activities, I so often have to say no, and feel guilty for it. Unfortunately it’s necessary though. Pushing yourself too far, or not looking after yourself, can cause so many more problems, not just for you but others too. Sometimes saying no to one things enables you to say yes to others.
I know my limits and I just have to hope others understand.
For the last day of Invisible Illness Awareness week I’d like to raise some awareness of the specific conditions I suffer with. Like many spoonies I juggle multiple illnesses, some are linked and some are separate. I won’t bore you with the science, but here are my conditions and their significant symptoms.
Joint Hypermobility Syndrome:
Unlike simple ‘hypermobility’ which is just a way to describe flexible joints and is often an advantage, Hypermobility Syndrome is when joints have a larger than normal range of movement, lack support and cause problems. They often don’t move in the correct way and are very susceptible to injury. The main symptoms are:
- joint pain
- muscle aches and pain from compensating for the joints
These are everyday symptoms, there are flare ups when things get significantly worse, and the joints are easily injured causing extra problems.
The hardest part of this condition is that it is degenerative; the condition of the joints will only worsen, activities become more limited and movement harder. Most sufferers also develop early onset arthritis.
This does exactly what it says. Your body doesn’t process pain correctly and send more nerve signals. Symptoms include:
- shooting and stabbing pains
- tingling feeling
Irritable Bowel Syndrome:
The bowel flares up causing any of the following symptoms:
- bowel pain
- bloatedness and wind
More than being sad, the brain is actually lacking certain chemicals which causes a variety of symptoms, including:
- feeling low
- frequent crying OR inability to cry
- lack of energy
- feeling numb/empty
- over-thinking and over-sensitivity
It’s normal to worry to some extent, but anxiety is another level entirely. It has these symptoms:
- thinking the worst
- being scared of situations
- difficulty sleeping and/or nightmares
- difficulty controlling breathing
- excessive sweating
- panic attacks, sometimes with heart palpatations and numbness/tingling
There are so many more conditions out there. As Invisible Ilness Awareness Week comes to a close I urge anyone who doesn’t know what it’s like to live with an invisible illness to just have a little more patience with everyone as you don’t know how they may be suffering. If you do know someone is struggling, never underestimate the power of a friendly word, listening ear, kind message or social invitation.
Thank you for reading!