A Guide for Anyone Who Needs to Support Someone With a Chronic Disease
Bringing awareness to this guide is very important to me. I found myself feeling all alone after my diagnosis. My whole world changed and I felt that no one understood what I was going through. My friends and coworkers had a hard time understanding the pain I was in. I didn’t look “sick” so I should be able to continue to do the things I used to. Having an “invisible” illness can lead to people being judged and mistreated. So please, if you have a friend or a loved one who has a chronic illness, please read the following tips so your loved ones do not have to go through this journey alone. I ask that you please share this because the more we educate and bring awareness, the more supported they will feel.
So if you are in a position where you need to support someone with a chronic illness such as fibromyalgia, rheumatoid arthritis or any other chronic disease, there are a few things you should know. It will make the entire process much easier, both for you and for the individual who is battling the disease.
Education is key.
Finding out as much as possible about the disease is vitally important. It is essentially the only way that you can arm yourself with the knowledge necessary to ensure both you and the affected individual are capable of dealing with the disease in the most positive manner possible.
Respect physical limitations.
People will try to keep up with you by doing all the same things they’ve done the past. This can be painful for them, both physically and emotionally. It also might make them prone to injury. Remember that they may have physical limitations you don’t have to worry about. However, you should always respect their limitations and choose activities that you can both enjoy.
Look for signs of pain.
Many individuals will not tell you that they are in pain. If you know what to look for, you might be able to help them. Notice when they seem subdued or when they are not quite themselves. Watch how they move, the expression on their face and whether or not they are breathing easily.
If possible, try to put yourself in their shoes and understand how you would feel if the disease were affecting you personally. This might help you see things from their perspective more readily.
Listen to and validate feelings.
One of the best things you can do is simply listen to what they have to say. Validate their feelings about their disease. Above all, don’t get in the habit of having a contest where you are constantly trying to one-up them with your own ailments. This might be meant as a show of support to help them understand that everyone is battling something, but it often comes across as though you are more interested in yourself than you are in them.
Be patient and helpful.
Do your best not to get frustrated with an individual who is slower or can’t do something because of their disease. Instead of expressing frustration, give them the chance to do what they need to do themselves and then offer help when it is appropriate.
Treat them with dignity and include them in your life.
Nothing is worse than being treated as though you are less of an individual because you have a certain disease. That doesn’t change who that particular individual really is. Try to see past their disease because it doesn’t define them. Include them in your plans and make a special effort to do things with them they can comfortably do.
Staying positive is key for anyone who is battling a chronic illness. Many times, their personal outlook on the situation can have a dramatic impact on the way they feel. Give them the chance to take an otherwise negative situation and turn it into something positive. If you can, help them along the way.
Silence is OK.
There will be times when the individual in question doesn’t want to talk about their illness. This has nothing to do with you. It is OK to simply be together in the moment without having to find something to say.
Remember it’s not your fault.
So many people who are close to someone with a chronic illness blame themselves. There is no point in doing this. It isn’t your fault any more than it is anyone else’s. It is simply something that happened and now it must be dealt with.
If you follow these tips, you and the person who is going through their own challenges can find better and more effective ways to deal with the disease. It is a challenge for everyone involved but as long as you rely on each other, the entire process can become much easier.
Follow this journey on Rockin RA.