With all the problems we have to face daily, we sometimes forget that our loved ones go through similar issues.
Especially during the time when we don’t have a diagnosis and we have no idea what causes our symptoms we struggle a lot.
We feel like nobody would understand us. Everyone tries to give us smart advices, like „stop letting yourself go like this.” They think if nobody can find the cause there cannot be one.
We have to be patient with other people. They might have no idea what to do or say to us and maybe they are desperate seeing us suffering. They do not mean it to offend us, they might just try to keep us from giving up.
I was very angry and frustrated especially in the beginning of my journey to diagnosis. The doctors did not believe me and sometimes I skipped the anger at the wrong people.
As I already wrote in my post „How do I cope with being sick“ the most important thing is to accept the disease. Then it also will get easier for the people around us.
Talk to the people who love you. Tell them about the tasks that are difficult for you to accomplish and why this might be. Explain that you really try hard to do things but some tasks might worsen your condition and therefore you have to quit them. Ask for help whenever you need some but still try to be as independent as you can. There is absolutely no shame in asking for help but it is very important to show that you value the help of others. Do not take it for granted. Again, a THANK YOU is always appropriate.
I guess each of us has lost friends, family or even the partner due to the illness. For me it was very hard to deal with those losses in the beginning of my disease. But it had some positive sides too. The people who stay with you in this situation are true friends and really love you.
Because of our disease we spend a lot of time online and talk to other patients. This is good and important to deal with this condition. But don’t forget the people in your real life, they are also glad to see you. Don’t spend your whole life in the online world even if it seems easier.
Create a „wellness time“ with your loved ones in a disease-free zone. This relaxes you and your family. Other „healthy“ people do have problems too. Don’t forget to ask what’s going on in their lives.
Also think about the fact that your friends might believe that their problems aren’t as bad as yours and therefore they are afraid of mentioning it. But friendships only work if you take the time to listen.
Every person whose life turns upside down from one second to another, from being healthy to being very sick, changes mentally. And that is probably normal. Give your friends the time to get to know your new personality.
There are always activities you can do with your healthy friends. Try to find something which is fun but still doesn’t overwhelm you. Explain to your friends that you still want to be invited to parties, even if you have to cancel a lot. Tell them what activities still work for you.
It is particular difficult for your partner with whom you have been very active in sports before. But even in a relationship you can find compromises that work for both of you. You should also give your partner the chance to enjoy activities alone. It does hurt to see someone else enjoying the activity you were able to do a couple of weeks ago but try to see the positive effects. Now you have time for yourself as well, try to enjoy this time. Find new hobbies.
Any form of awareness for our condition is great. If you think it is right for you, educate everyone who wants to hear it. We all are sometimes called lazy or treated without respect because we have an invisible illness. Any person who is opening up their mind and changes their opinion is good. For me it is very difficult to express my illnesses in simple words. Try to note the state of knowledge of the person you are educating.
Nobody will know how we feel, but they will try it if we just talk to them. Keep in mind that your loved one might feel helpless and does not know what a good response would be without upsetting you. And above all: don’t be mad about comments like „get well soon“. It is meant to be nice and even if we cannot be healthy we might get a little better.
A few suggestions for activities which (sometimes) work for me on a better day:
Reading a book together (or equal: listen to an audio book)
Cinema (preferably in a deluxe cinema with adjustable chairs with good back and headrest)
A little walk with picnic
A coffee on the terrace with friends
A trip to the lake (take a blanket in case you need to rest)
A nice girls evening with DVDs
A ship or boat ride
A small board game night
A visit to a wellness bath