Since being diagnosed with Ehlers Danlos Syndrome 9 years ago I have been passionate about raising awareness of chronic disease, chronic pain, chronic illness and disability. When I first got diagnosed I was so overwhelmed that even with an incredibly supportive husband and family I felt so alone. I decided I never wanted anyone to feel the way I did which is what started my dedication to the cause.
One of the first things I did was set up a youtube channel called Unexpectedsongbird (all one word) to share my reality of living with the disease in a hope to raise awareness, educate but most importantly validate the lives of others living with EDS.
One of the things in particular that I have learned from my own experience and being part of this community is how important the language we use is when living with chronic disease so here are my top 5 ways you can simply and easily change the language you use to support those living with chronic disease.
1. "You look so well" or "You don't look ill at all!"
Although you are likely saying this in kindness and it is meant as a compliment when someone lives with complex invisible chronic disease they have often faced years, sometimes decades of being told that there is nothing wrong with them and their symptoms are all in their mind by health professionals and have faced those sort of comments but even crueller from people they know in their personal lives such as they are attention seekers and liars. Someone can live with debilitating illness and pain and still look well and whilst you may be trying to lift their spirits telling them they look well behind those words what they hear is "I don't believe you".
Instead you could say "It is so nice to see you out" "I'm so pleased I could spend time with you today" "It was wonderful to run into you" "Your make up look wonderful today" they are all ways to lift someone's spirits without making them feel that they have to justify the way they feel over the way they look.
2. "How are you?"
"How are you" is a very different question in the well community compared to how it is for someone living with chronic disease. My personal struggle with this question is that I feel I can never answer it honestly. In the past when I have with people who aren't my closet friends I can see how uncomfortable my answer has made the person who asked even if I have just said "My nausea is really awful at the moment and my joint pain is terrible". It isn't anyone's fault but suffering makes people uncomfortable and they just don't know what to say when they learn of it.
If you are unprepared for what to say if someone tells you they are having a difficult time it is simply best not to ask at all. If you ask it, Mean it. Unless you feel fully prepared for an honest answer and are willing to support the person (even with something as simple as "I am so sorry to hear that") once they have answered then there are some alternatives you can say to still take an interest in someone's life without asking "How are you?" which is such a broad large question to someone living with chronic disease or pain.
"Have you done anything nice today?" "How's your family?" "How's your son/daughter/cat/dog"
3. "You're so lucky you don't have to work"
This one is simple...just, DON'T! Many people living with chronic diseases are utterly devastated they are unable to have the career (myself included, it is something I feel every single day, I really mean every single day) they dreamed of or worked in before their illness took hold. You may hate your job but people living with chronic disease are not on one long holiday! They feel unwell every single day and may be in pain every second, every minute, every hour of everyday. They may be in and out of hospital facing serious operation after serious operation for years on end. Not being able to work through illness and not needing to work because of other financial securities but still have perfect health are absolutely not the same thing.
Instead why not enquire "If you ever need to talk about not being well enough to work I'm here to listen" "Do you have any hobbies?" "Have you enjoyed an experience since I last saw you?" "Do you have a good book or series on the go?"
4. "You're so strong" Now I am throwing this one in here and I accept it is a little controversial but please bare with me and let me explain why!
My issue with this statement, which I know is nearly always said in awe and kindness is that it takes away from the person the absolutely monumental effort they have to put into living with their disease and the bravery it takes to face so many extreme medical situations, like they can cope with all this because they were born innately stronger then the next person. Trust me, they were not.
Chronic disease has a huge impact on people's mental health so you are then fighting on two fronts, I can only talk about Ehlers Danlos Syndrome here because that is my community but throw into the mix an enormous amount of people with EDS are also living with PTSD caused by the extreme illness, not being able to trust their body, critical medical situations they have faced and this isn't just strength, this is bravery, this is hard work, this is dedication and choosing life.
My feeling is that is to merely say someone is strong does not acknowledge everything else.
I also have concerns that the thing I read time and again is how people feel they are letting their friends and family down because they "just can't be strong anymore", I fear this statement places pressure on people to be strong all the time even though I know it isn't intended too when it is said.
Instead perhaps we could to say to one another "I see how hard you are fighting right now and I really admire that but if you get tired and it feels too much that is ok too, do you have plan in place encase that happens?"
"I admire your bravery in the way you face your illness"
5. "Well you always cancel so I'm not going to ask anymore"
Unfortunately yes, people living with chronic disease, pain and illness do have to cancel plans a lot but please trust me this is not a personal attack on you and the person cancelling the plans will likely be devastated and feeling desperately sad that their body has taken away one more thing from them. Having to cancel plans can be a real mental health trigger for people living with chronic disease so please be flexible.
If someone has to cancel plans ask, would they like you to go to them (many times my friends have come to hang out with me on the bed!) would they like to video chat instead? Can you immediately offer other dates so they know it may not be today but you can try again.
In these situations phrases such as "I am so sorry to hear that but don't worry, we will do it, we'll get there, I'm not giving up until we do" are wildly supportive and could really help support someone emotionally.
Remember this isn't personal it is medical. Say it to yourself out loud if you have too! "This isn't personal it's medical" This does not reflect that the person isn't putting effort into your friendship it is a true reflection of what it is like to live in a body that you do not know from one hour to the next what will be going on with it.
I hope these language alternatives can help give you a window into the "chronic community" and encourage you to really think about the language you are using around someone living with chronic disease.
Peace, love and blessings
Chloe xxxx
