Do you think Cancer gets more understanding, support and compassion than other chronic or terminal illnesses due to people’s knowledge and the media portrayal of cancer sufferers?
I think that because most people have been touched by cancer in some way that it makes it easier to “get”. That’s one of the reasons that I want to increase awareness of invisible illnesses such as ME, PBC, MS, EDS, RA and POTS…(if you don’t know what some of these horrible life limiting conditions are then get in touch and I’ll give you some more info.)
I don’t have cancer but I, and loads of others struggle everyday with conditions that are degenerative, life limiting and incurable.
I take 27 tablets and 3 sachets of meds everyday to help manage my pain levels, slow the progress of my autoimmune disease, manage the other symptoms of it, and control my other conditions. I’ll be on these (or some other combinations) for the rest of my life.
My condition doesn’t progress in a linear way so I can feel “ok” one day and dreadful the next. I might end up needing a liver transplant, or I might not. This unpredictability of chronic illness makes life really difficult to manage.
There is very little knowledge, research and funding available for these conditions and yes cancer is horrific, yes other high profile conditions need research and funding as well as they affect more people, and yes, I would love to have a cure for all diseases, but the less well known illnesses need to be talked about and understood as well.
Those of us living with them need to be treated with the same kindness and empathy that is given to people with Cancer, we need the same level of medical support and charities that can help fill the gaps when the NHS can’t manage to help us as they get to a point where there is no more help.
We tend to fall through the cracks as there is not a vast amount that can be done. We just have to learn to live with our conditions and manage the symptoms as best as we can. We have to come to terms with not having the life that we expected and not being able to do the things that we love to do.
Most of us will never get better. Most of us will have to change our plans for our futures. For most chronic illnesses acceptance is the only option.
This does not have to mean “giving in” or “giving up”. This can mean living a full and happy life, just with some adaptations. This can mean weeks, months or years being housebound followed by weeks, month or years of looking and feeling “normal” or as close to it as possible.
The ups and downs make us strong. Constantly having to change expectations or adapt dreams and plans makes us adaptable. The challenge of maintaining and developing relationships through all of this makes us empathetic and better friends, family members and partners.
People who survive cancer are amazing!! They are strong, they are fighters and they are admirable. Their families and friends have struggled and suffered alongside them. So are we, and so have ours!
I am Victoria Bartle and I have invisible illnesses. I have ME/CFS a condition that causes chronic fatigue, PBC an autoimmune condition which affects my liver and bile ducts, gastritis and a hiatus hernia that cause reflux and stomach problems and fibromyalgia which causes chronic fatigue, chronic pain and “brain fog” I also struggle with depression and anxiety which affects my mood and ability to interact with people.
I would love to find a cure for one or all of my conditions. I will and have tried lots of different things to help my health. I’m now in a place where I just want the pain to be a bit lower so my mobility isn’t affected so much. So I’ll carry on with reducing sugar in my diet, getting regular massages, using my TENS machine and trying other alternative therapies as and when I feel the need.
I shout about my health from the rooftops because I want people to understand that we are all going through something that others can’t see. It might be your health, the health of a family member or friend. It could be relationship problems or any other challenge that life throws at us. I want us all to remember to be kinder to each other. To stop judging. To stop the assumption that one illness is worse or better than another because they aren’t. My pain is no better or worse than anyone else’s. Just because I have these challenges doesn’t mean that I can’t appreciate and empathise with the challenges of others.
I am lucky to be surrounded by people who have accepted my current limitations. I’m still invited to events, outings and parties. I’m still called on to listen to complaints and I’m still there if my friends and family say they’re tired or in pain as I understand. So many other people don’t have that. So many people with chronic health conditions are left out of plans, they’re not told about events and they are not included in their friends lives. Sometimes this can be done with the best of intentions as they don’t want to make them feel worse, cause them pain or put their problems on them as they have enough to deal with. But trust me, we still want to hear from you, we still want to be invited, even if we can’t come and join in. We still want to hear complaints about annoying bosses, whinging kids and how you feel crap because you’ve got a cold. These things might not be part of our lives now and yes we miss them, yes we’d love to be in your position and have these things to complain about, but you’re still important to us and your problems are still important. So as we use our enhanced empathy skills to comfort you and share with you our new view of the world that life is short and you need to get over the little things and suck the marrow out of your life enjoying every second. Then you can listen to us complain about stupid doctors who have no idea what our condition is or how it affects us. We’ll tell you all about what’s good on Netflix at the minute so if you ever have a second to sit down you’ll never waste your time on something rubbish again as our days, weeks and months in bed have been spent watching everything ever made! We’ll whinge about tests taking ages, benefits being a nightmare and not being able to find a good therapist/GP or consultant who can manage the smorgasbord of conditions we now have. We’ll laugh and make jokes and we’ll remember that we are not simply our illness, but it is a huge part of our lives and deserves a mention.
Cancer is not the only illness out there…there’s a million more. We can’t afford to spend money on everyone of them and research will never be funded to the extent of finding cures for them all. Cancer is “common” so yes let’s try and fix that. Then we can move onto some others. Heart disease, stroke, Parkinson’s and mental health conditions are also important to me and I want a cure for them as well, but in the meantime, while we’re waiting, let’s respect each other. Let’s not give preference to one persons struggle over another’s. Please just be kind to each other.