I want to discuss the social lives of myself and other disabled or chronically ill people.
Some genetic conditions do not cause issues into people in their early to mid-20s, and there are reasons for this, but I want to focus on the social effect. Also, accidents and illnesses happen all the time during adult lives, which has a significant impact on there social lives. Especially when there has been a lot of change in friendships between school, college, uni and work. If you have a hobby or watch a sports team. All these are different friendship groups. Also, staying in contact is more challenging if you can no longer attend your hobby group.
Then, disabled and chronically ill people can be hard to remain friends with if you don't have understanding. There are reasons why we often cancel plans, usually at the last minute. We also ran late because the bus had a pushchair, which would move, or it took longer for medication to work before we could get out of bed.
We turn down invites because the place our friendship group wants to go is unsuitable for us. Then, people like us often stop seeing them as friends and never get invited because we slowly get forgotten. I hope that, as other disabled people read this, it becomes relatable.
Speaking up about this is hard; it's hard to tell a whole group of friends could do something else. Especially if you don't even know your limits, finding ideas can be a problem in itself, so without a different idea, it's easier to just miss out. When energy is already low, sometimes the easy option is all you can face.
So start by talking to your closest friend(s). Think about how you plan to meet up and explain that you have good and bad days. Just because I did something once doesn't mean it is always possible. Explain you need recovery time. Something I have done to plan meeting up with friends is to explain, if I am having a good day, let's do x; if I am struggling, let's try x; and lastly, explain you have days where you can't leave the house, but let's watch/play x and I apologise if I have to cancel.
The first year of being disabled and chronically ill is the hardest because not only are you working out what you can and can't do, which leads to you have to add grief into the picture, and then suddenly, the weather changes and the lists get erased, and you start again. Also, I would add that if any significant improvement or worsening seems to happen in the first year, in my experience, it's important to tell your friends you need time to adjust, adapt and get your mind around it all.
Instead, most just let themselves get erased from the group, not from choice but from exhaustion.
I believe if you explain why you want to change plans or explain you are happy to go to the pub, but you will not be drinking alcohol because of medication. There will be support; I wasn't able to do things like this for a long time, as I didn't want to be the boring one. However, 7 years ago, alcohol-free beer was hard to get, whereas most bars now do have an alcohol-free option if you are not ready to share openly yet. You will always have people who will make it harder and beg you to drink alcohol and make it a lot worse and extremely hard, and you just don't need them, people, and be ok with not keeping them friends, even when they might be the last friend you have. You need to ensure your health won't be put at risk; that type of pressure is tough to keep fighting.
I have found my friends who are girls are worse at being supportive then my male friends. I tried to please them and push my body to 'fit in', and instead I actually realised they were just fake friends and I needed to move on. Which is hard, upsetting and you want to blame yourself. But it's not your fault, or even your disability's fault, you shouldn't put more strain on your body, while it is already under so much.
If you are in a social group, such as supporting a sports team where not everyone is your friend or you don't want everyone to know your personal business, ensure you have 1 or 2 friends who know enough information to ensure you don't get pressure into things that could affect your health. They can help make sure you have a chair, remind you about medication and ensure you get suitable food/drink.
I am not saying it's easy, in fact, it took me years to get to a stage, where I put my health first. It was only after I did this with disabled friends, I had the courage to do it around able people. But not everyone gets the opportunity to have friendship groups of disabled people, and then end up lonely.
Even now I have not spoken to some social groups, because I don't know how they would react. No one is perfect at finding a life after something life-changing, there isn't a correct way to find a way. It is a journey and you won't always have control, you just have to do what you can do take control when thing slows down and be ready to let go when you can't hold on anymore.
One reason people may not go back to social events is the way they don't feel involved, wheelchair users or people who need to sit down a lot, struggle to have conversations with friends if they are standing up. This leads to people like me asking themselves if is it fair for you to 'control' other people.
Control is a strong word for asking friends to sit around a table instead of standing up, but this is how it can feel. I hope if you are disabled, you're not alone in feeling this way. The worst thing you want is all the attention, but you feel like you have to be, to enjoy the same experience.
This is why most disabled people are friends with other disabled people, because they have that understandment. But losing friends happens a lot quicker than gaining them, and this isn't just my version, this is all the story from other disabled people.
It seems there is a lot of understanding meant for a disabled child, as well as understanding meant for old people. But disability and chronic illness can happen to anyone and at any age. People say we will be always friends no matter what.
But if that person keeps 'letting you down' because they couldn't get out of bed and if they didn't reply to a message for 3 days or they had to change from going out drinking to going to a wheelchair-accessible attraction during the day, because they are in a wheelchair, and struggle with more side effects at night and can't drink alcohol due to medication. Would you still be friends, or would the friendship slowly disappear...
I get it! I honestly understand how pissed off you could get if this would happen to you. But what people don't remember is all the things you have to change ONLY when you see that friend. That friend is grieving all the things they now can't do.
I honestly believe it is a type of grief because in some cases it's going to be a very long different journey. With grief, you have many stages and I have been through them all many times, and it doesn't get easier. But you do eventually get to acceptance. I have been told several times, that you should accept you should fight!
Accepting means you know what you can and can't do in the pain/health you are currently with the equipment and knowledge you have. Most disabled people are fighting, they are doing what they can, and you might not see it.
Disabled or not everyone has battles, the problem is, it's hard to see what people are fighting. Not only have you got the mental health side (which I'm not going to talk about on this update) you can't see how hard it is for someone to give themselves a drink. It seems so easy, but you have so many steps to a simple task.
This leads on to giving and receiving help, I will use the example again if your friend was now in a wheelchair and needed help would you do it?
If I go out, I still have my disability, which has gotten worse over the years, which means I still need help with things, and this is another reason friends leave you because they don't want help open a door or pass you something. However, I am lucky, as I still have friends that do them things and many more but I did lose more than I kept.
I lost a lot of friends as soon as I was in a wheelchair, but slowly more and more left over the years, just because I would need a little help.
Which was deeply hurt and I struggled with it because I couldn't do anything about it.
People say they aren't real friends then, but I disagree, some were my friends they just didn't want to be my carer. Sometimes the line isn't simple and if you are going through this at the moment I am sorry this is harsh but some people don't like responsibility, or responsibility affects their own mental health, also it's only fair they are able to enjoy the experience as well.
I am not saying everyone who is no longer a friend, is due to that, there are a lot of fake friends out there, and this will run a mile as soon as anything gets difficult.
This has now left me and many others in a situation where 'mum' has to come to with me if I am going to an event, which of course means I don't invite people.
I don't need Mum around me every second if I have other support in place. I have also done some crazy things, like going on a rugby away match by coach, the coach wasn't wheelchair accessible, so I took my manual (I have a good friend to push) and I crawled (yes, like a baby) on a coach with my assistance dog and great friends Why, it was my birthday and I was with amazing friends!!! I didn't move for a week after, but the memories are worth it!
Both me and my best friend both bring our out Mums, and assistance dogs and we still have fun. We try to be as independent as we can, including me and my power wheelchair trying to pull her and her manual wheelchair up hills.
To ensure I have the best chance of making the planed event, I have to ensure I have planned clear days for a few days beforehand. This is so I can rest, this gives me the best chance of me having "my" normal day. I also make sure I have a few days after the event to ensure I don't let anyone else down, as I know I will be in high pain after, by resting I can lower my pain again.
Another way to ensure the event will be as pain-free as possible and ensure I do not have to miss the event. I phone to ensure the venue will be wheelchair accessible and know the plan for the day. This is, so I have time to plan, how I am how I am going to manage event or day out. Planning is most import, and a lot can be worked out with knowing what to expect.
The things which I need to plan are things to wear, such as if they are in the cold, I need thick socks due to not being able to wear shoes as this also causes extreme pain. I also need to know what to pack in my bag, there are the obvious such as medication and personal care items, but if I know it going to be a long day I pack heat packs and other aids which can ease the pain and blankets as the wind hurts my legs.
If we are inside, I will try to book a table so it is easier for me to have conversations with other people.
I didn't think it would be such a long piece but hope you have enjoyed.
