Medical MondaysFriendship Guest Post #5

This week’s post on friendship has been written by 31 year old vegan & book blogger Adele, who lives with Pulmonary Atresia, Ventricular Septal Defect & Collateral Vessel Blood Flow Dependency – a.k.a several heart conditions. In her guest post Adele discusses how difficult it is to be believed when you have an invisible illness & how hard one can push themselves to be there for the people who do actually care.

Hello! Thank you for having me as a guest blogger for Medical Mondays. My name is Adele, I’m 31 and I was diagnosed with a rare heart defect as a baby. The full medical term is Pulmonary Atresia with Ventricular Septal Defect and Collateral Vessel Blood Flow Dependency. Basically, I don’t have a Pulmonary Artery (the main artery that connects your heart and lungs). My body created a bunch of small extra vessels to try to compensate, which is why on an MRI it looks like I have a birds nest in my chest. I also have a hole in my heart where oxygenated and de-oxygenated blood mixes, giving a sexy blue hue to my skin from the lack of oxygen. On a good day my resting oxygen saturation is 80-85%. Other than my cyanosis (blue skin &/or lips), unless I’m using my wheelchair or mobility scooter, I look completely normal. There are a lot of aspects to living with an invisible disability but today’s topic is about how it affects friendships.

Building and maintaining friendships as an adult is very hard. It is easy to lose contact with friends, even if you care about each other, because life takes you in different directions. People move away, get married, have families and their social time becomes a lot more restricted. Add a disability or health problems into the mix and it can feel almost impossible to maintain friendships. Even friends that I have been very close to at some point in my life have now become peripheral ‘outer-circle’ friends. They are people that I would always call friends but who I haven’t seen for a long time. A big part of the relationship downgrade has been because of my disability and inability to visit them. However much you contact them, if you don’t go and visit then they start to think that you don’t care. I have been desperate to go and see friends but physically I am not up to travelling. Sometimes I’m not up to leaving the house. The chair. I know that they haven’t disappeared completely but it makes me sad that they don’t think of me in the same way anymore.

There was one occasion when I lost a friend before they even moved away because I couldn’t go to their leaving do. I was meant to join up with them at a popular bar in town but it was a busy Saturday night. My breathing is not good at the best of times and I really struggle in crowded, warm environments. As you can imagine it was not going to be ideal. I was getting ready to go when I received a text from my best friend, who was already there, telling me that not only was it packed, warm and stuffy but there was nowhere to sit. That is a deal breaker. No matter how much I would like to, I can’t go somewhere if there is nowhere to sit down as I physically struggle to stand for any significant length of time. I sent an apologetic message to the friend that was leaving explaining the situation. They messaged back saying maybe they would try to catch me before they left. They didn’t. They didn’t tell me when they came back to visit either. I was the only person in the entire friendship group that wasn’t invited to their wedding.

When I left university I had two close friends. Kat lived in Manchester and Joe lived towards the South coast. My health was very good during that period and we used to visit each other fairly regularly. They were wonderful times, even if Joe was pretty high maintenance (at one point he would only eat at Nandos. We once went 4 times in 3 days). A couple of years later he moved to London, which was a really positive step for him. He had a boyfriend and a new job as the store manager of a gift shop. The grand opening of the shop was coming up and he very much wanted Kat and myself to be there. I really wanted go not only because it was important to him but it would also be great fun. As the event drew closer I knew I wasn’t going to be able to go. My health had gone downhill and I was really struggling even with normal daily activities. Kat visited a couple of weeks before and noticed I wasn’t doing well. She agreed that I shouldn’t go as it would have definitely been detrimental to my health. Feeling more confident that I was doing the right thing, I messaged Joe saying I didn’t think I would be able to go and explained that I wasn’t very well. Kat went to the store opening without me to support Joe. I wished him good luck on the night and told him to have fun. The problem with being in a friendship triangle is that you always find out what the third person has said. Although I don’t know the exact words spoken I found out that Joe was unhappy I hadn’t attended. He didn’t believe that my health was as poor as it was, thinking more likely that I couldn’t be bothered. That really hurt. It is effectively being accused of lying. He cut me out of his life as if we had never been close friends.

Whether it is with new friends or old friends, cancelling plans has always been a big issue. I am reasonably well organised and I like to make plans in advance but my health isn’t guaranteed. There are so many factors that impact me from how well I’ve slept to silly things like the weather. Knowing I struggle in a busy bar I’m sure you can imagine how much I love humid heatwaves. It is impossible to plan for all eventualities so sometimes plans have to adapt last minute or I have to cancel. Most people will let the odd cancellation slide but if there is any regularity then they soon stop making plans with you. It is the same with friends who invite me out and I have to decline multiple times in a row because even though I would love to go, I can’t afford to push myself at that moment in time. They stop asking pretty quickly.

One of the hardest issues I have to face with an invisible disability is that people don’t believe me. Even people who call themselves my friends. They believe that I have a heart condition but not always about how it affects me. Friends who have spent any time with me can see that I struggle with walking distances. That is measurable, visible. I literally turn blue and have to stop and lean against whatever the closest inanimate object is. Sometimes friends can see I am struggling to breathe, especially when I look like I’m doing an impression of a snake trying to dislocate it’s jaw to swallow larger prey. My prey being oxygen, any oxygen, just please God let me take a deep breath. What they don’t see or can’t measure in some way becomes fiction. Recently, I went up and down the stairs too many times in the afternoon making cups of tea for my partner who has been poorly. At one point I put the tea down, collapsed onto the bed in a ball and didn’t talk for twenty minutes. Sometimes I find it hard to talk, as if oxygen is too precious to be used. Very few people understand that I can be okay in a morning and by the afternoon I have deteriorated to that level. It can happen very quickly. The friends who understand that though and really know me, know that I will push myself very hard in order to make them happy. When a true friend needs me I have done, and will do, things that I shouldn’t to be there for them. Things that I know will make me ill. Generally the friends who understand me best are the ones who have problems of some sort themselves. They understand what it is like to not be believed.

Making new friends can be very difficult for me. I don’t go out as much as I would like to, which reduces my opportunities to meet new people. There’s loads of events that I would love to attend but I rarely end up actually going because of my health. I am tired all of the time, which is not a great motivator. Plus I have to be aware that my tiredness or fatigue easily turns into full blown exhaustion, which can take me days if not weeks to get over. Online gaming has been a great way for me to meet and socialise with people when I’ve not been well enough to do other activities. Both my best friend and my partner & I met online, through a mutual friend. However you meet people online, you get to learn about each other over an extended period of time without the pressure of having to explain all of your limitations from day one. When I meet up with someone new there’s the practical stuff of having to go somewhere with good parking facilities, that isn’t far to walk or has access for a mobility scooter. Asking people I don’t know very well to push my hefty backside in a manual wheelchair is not my favourite thing funnily enough. Then there is the actual activity – going to the cinema is fine, going to a gym class… not so much. It can be complicated.

I have a lot of ‘outer-circle’ friends and a handful of ‘inner-circle’ friends. Some of my best friends I don’t see very often and sometimes we don’t talk for big chunks of time. It doesn’t matter. They don’t take it as a personal sleight and neither do I. A real friend is a person who can slip in and out of contact but when you talk to them, when you see them, it feels like it did the last time and if you need them, they will be there. They slip into their space on the sofa and even if the whole world around you has changed, you know that your relationship with them hasn’t. Those friends are worth everything. For the people who matter to you, be that kind of friend.

I know there are a lot of people out there with similar experiences. I’m always happy to talk so if anyone wants a chat feel free to DM me on twitter @dellybird

Thanks for reading!

– Delly

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