Fibromyalgia seems to be everywhere these days. We are hearing about it in the media (Lady Gaga has recently revealed that she has been diagnosed with it) and doctors are becoming more accustomed to the illness and as a result are making more accurate diagnoses. I am sure that as a result, everyone knows at least one person with this dreadful illness. But do you know what you can do to help make their lives somewhat easier? May 12th is International Fibromyalgia awareness day and I thought what better way to bring awareness to the illness by sharing 8 ways to help someone with Fibromyalgia. It is a little under 9 years since I was diagnosed and honestly, I wouldn’t wish this on my worst enemy, but if I can help educate friends and families on how to help other people like me, it will go some way to making this whole situation more bearable.
Understand what this illness is about. Ask your friend or family member what fibro means to them and how it affects them. As with all illnesses, not everyone experiences the same symptoms and it is important to understand how each one affects us individually. I can safely say that the one thing that pisses people with ‘invisible’ illnesses the most is being told ‘but you look fine!!’. Just because we look fine on the outside does not mean we are fine on the inside. It means that we have learnt to put a brave face on and that today is probably a better day than most. It does not mean we are fine.
Don’t Take Cancellations Personally
All though we all live with fibro, it can have this funny way of sneaking up on us and surprising us at the last minute. We can feel fine and then within an hour feel like we have been hit by a bus and cannot move. We become pros at cancelling appointments and seeing friends. But please do not take it personally. It’s not that we don’t want to see you – I promise we do – it’s just that self-preservation must come first and we must rest as much as we can when the fatigue sets in. Ask can you drop over, whilst your friend stays in their pj’s. Ask them do they need anything or just tell them that you are here for them whenever, but don’t take it personally, sometimes our body just cannot do what we need it to do.
Offer to Help
During the time of a flare up, we have to be careful of what we do. If we overdo it one day, it can take days to recover. Offering to do some cooking, cleaning or minding children can take such an immense weight off of our shoulders one the days we can only do the bare minimum – sometimes this can be as little as getting down the stairs. I know I am too proud to ask for help (just like I guess most people with fibro are) so don’t wait for us to ask. Just 30 minutes of your time can make a huge difference to our day.
Fibromyalgia is a life-long, debilitating condition. It is painful, can be all consuming and pretty much turns your life upside down. However, it is important for the wellbeing of the person with fibro and their friends and family to remember that it can be treated and controlled – it is just a case of finding the right combination of treatments. For me, the most important way for me to keep my sanity is remembering that I have fibromyalgia, it doesn’t have me. I am not defined by it and it is not the total sum of my existence.
Remind Them It’s Okay to Stop
Whilst, I generally try not to give too much thought to the fact that I have this terrible illness, I do get incredibly frustrated that my body cannot do what it is supposed to do at least once per day. There are many (many) times that I just refuse to stop and keep going which usually results in me flat on my back in excruciating pain and consumed by fatigue. I need people in my life to tell me that it is okay to stop. Thankfully, I am surrounded by people who tell me to stop, rest and sleep. In my opinion, it is probably the most important support that someone with fibro needs.
But They Must Keep Going Too
Exercise is a vital part of controlling and treating fibro symptoms. The last thing we want to do when we are in pain or fatigued is to get up and go for a walk but it has been proven to improve the symptoms associated with fibromyalgia. Providing support by going for a walk or swim together (both activities are low impact and can be done at the pace of the person with fibro) can help alleviate pain and fatigue.
Suggest They Join A Support Group
Sometimes the best support you can get is from those who are going through the same thing as you. Support groups can teach you coping mechanisms that you aren’t already using and introduce you to people who are going through similar experiences. Learning to speak about the issues we are going through can help with the stigma attached to invisible illnesses and help with our mental health too.
Do the Little Things
Small things like making a hot water bottle, running a bath and bringing medication and drinks mean more than we can say and it is one less thing for us to muster the energy to do.