We all have family, we can’t pick them. We are stuck with them. Sadly, though they are usually the ones who hurt us the most. Whether it be by not being supportive or by making snide comments about our illness. When they make rude comments about us being lazy or us not doing anything to improve our health, it is very hurtful and hard to take. That being said families of people with autoimmune issues also have a lot to deal with. Its not just the person with the illness that has to learn how to cope. So, why do our families act the way they do? Do they not understand or do they just not care, that is the real question. Do we need to education them more? Or will they ever understand? Its hard to say for sure. Some people will just never understand and we learn how to take it. All we can do is provide them with the best education for our situation as we can. What they do with it is there purgative.
How do you define coping? Most would say it is how we face and deal with problems or issues that arise throughout our lives. It involves facing the problem head on and finding a way to deal with said problem. People who are diagnosed with chronic illness need the love and support of their family in order to cope successfully. That can be reciprocal, the families also need the love of the ill in order to cope. Many times people who aren’t coping can have trouble expressing their feelings and feel that they are out of control. Which makes the situation harder on everyone. So how do you go about learning to cope or educating our families to cope?
Knowledge is power “A man of knowledge is reinforcing power” Proverbs 24:5. The first step in this process is to find a doctor that you can easily communicate with and who you find helpful. One who doesn’t rush you in and out of his office and is willing to answer any and every question that you have. The next step is to keep asking questions and be specific until you totally and completely understand your situation. One important thing to do during this step is to WRITE YOUR QUESTIONS DOWN!!! It is very hard to remember everything when you have such a short time with doctor. Next, it is very important that you inform your family as early as you can. The longer you wait the more they may feel left out. One of the most essential parts of coping is learning how to deal with and control harmful emotions. It is really easy when emotions are high and raw for hurtful things to be said.
There are somethings that should NEVER be said to someone with a chronic illness, and it never hurts to pass that information along to family members. Things never to say:
- But you don’t look sick!
- You’re cancelling on me AGAIN?
- I know how you feel. (Unless you have a chronic illness YOU DONT KNOW!)
- If you need anything, let me know! (Really!?! How many people actually follow through with that?)
- If I could be sure your health would be OK by/for (fill in the date/ or occasion)
- You can beat this! You will be back to normal in no time at all!
- Should you be eating THAT?
- I wish I could just stay home all the time.
- God never gives you more than you can handle!
Our families should focus on the things we need to hear to better help us cope! Things to say:
- Tell me more- Ask how their day was or how they are feeling and then REALLY listen.
- I believe you – For most people sick or not validation is vital when dealing with something big. This is even more true for people with the Invisible Illnesses because the symptoms are invisible and they are struggling with a way to “prove” their illness.
- I support you- Many times people lose long time friendships and even relationships with their families when they become ill. So the more support the better!
- I care about you and I’m here with you for the long haul.
Dealing with the diagnosis of a chronic illness and living with a chronic illness is one of the worst and hardest things a person can ever go through. And we need all the support we can get. Whether it be from families, friends or support groups. Do whatever necessary is to find people to support you. I hope you find some help in this, and feel free to share this with family if you find it helpful
-Amber
Resources
- https://themighty.com/2016/04/what-to-say-and-not-say-to-someone-with-a-chronic-illness/
- http://wol.jw.org/en/wol/d/r1/lp-e/102000363#h=7
- http://autoimmunewellness.com/5-things-say-someone-autoimmune-disease/
