Wednesday, January 4, 2012

Support and Understanding for Individuals with Auto-Immune Diseases

Support and Understanding are two very important pieces in the life of an individual with a chronic illness. Support and understanding are important to every one to some degree or another but they take on a different role in those will chronic illness. A number of people are blessed to get their support and understanding from loved ones. This may be friends or family and when one is truly blessed they get it from both. There is however a difference between the support and understanding that the average person needs compared to an individual diagnosed with a  chronic illness.

There are diseases that the average person is aware because of fund raising campaigns or personal experience. This would include disease such as Heart and Stroke, Cancers etc. When an individual is diagnosed with one of these diseases there is immediate support and understanding and it comes from many sources far and wide. They are embraced and people want to do whatever it is they can to help. They have both support and understanding almost instantly upon others being made aware of the diagnosis. It is also important to note in individuals who have these types of diseases there is an attitude of fighting against something and when they win that fight they become survivors. In the cause of Auto-Immune diseases there is no winning the fight you will have the disease for life. There is nothing to fight, nothing to overcome and nothing to survive. You have to live with the pain and illness for the remainder of your life. That is a very daunting thought. It is overwhelming to know you will have this forever and that there is no cure. It is a long and lonely road to be on.

Then there are auto-immune diseases that unless you have been been directly exposed to by a family member or very close friend you are not likely to know of them. Even then you may not have a good handle on what it means with regards to day to day functioning. There are no cures for these diseases and most of us try not to let those closest to us know just how much pain and suffering there is. The reason is simple it is because there is nothing that can be done to help beyond what our dr's are doing for us. There are hundreds of auto-immune diseases, where the body basically turns on itself and starts attacking healthy cells rather than cells that are full of disease.

Pick an auto-immune disease and then hit the facebook groups and forums on the internet. In every single one usually many times daily you will see at least one if not many more complaints that nobody understands. That they do not receive the support they so desperately need. Nobody understands what it is like to live with chronic pain day in and day out as a result of these diseases. While I agree that unless you have experienced it first hand you won't truly understand what the cumulative effect on a person is. However, you can research to learn as much as you can. There is no reason that you should not understand to the degree possible without your own diagnosis, what your loved one is going through.

I thought it might be helpful to compile a list of ways you can understand and support your loved ones who suffer from auto-immune diseases. Now this list is being complied from my understanding and the fact that I live with 4 auto-immune diseases (Hashimoto's, Auto-Immune Rheumatoid Disease (formally called RA), Raynauds, Sjorgens and Fibromyalgia which likes to hang out with Auto-Immune Diseases for some unknown reason. I am sure that I will miss some things so please in your comments add to my list. Let's help people who do not have auto-immune diseases to be able to understand and support their loved ones.

Understanding and Support for Individuals With Chronic Illness (Auto-Immune Diseases)
Here are things that you can do:

  • To be there for them, to allow them to vent their frustrations, to talk about what they are experiencing is really all they want. They don't want you to fix things and they know you cannot make things better but you can listen. It is a very powerful thing to actually listen to another. They may want to express their frustrations with their health, the pain and how it impacts their day to day lives or they may want to talk about things to distract them from their daily struggles.
  • They want your understanding when they have to cancel a date because they are having a difficult/bad day. They want to see you and do what you had planned on just as much as you do. They feel terrible for cancelling but their diseases often leave them no choice. Do not take it personally if they cancel. It has nothing to do with you and everything to do with their disease(s). Reschedule or ask if you can drop by and watch a movie with them or bring dinner if you had plans to go out to eat. Sometimes that might be possible unless their pain is that bad that they have taken meds and gone to bed. I know I won't allow friends to drop around when I am in severe pain. I don't like anybody to see me like that if I have a choice. However, I love those who offer to come see me if I can't make it out, even if I have to pass on that offer as well.
  • Research their primary and secondary diagnosis'. Very often with auto-immune diseases there are multiple diagnosis. It is rare for an individual to have just one. Read up so that you have an understanding of what they go through and what they are facing in the future.
  • Very often depression is something that most people with chronic illnesses suffer from . For some it comes and goes in long periods, for others it is a constant companion. When depressed and/or in pain individuals often withdraw into themselves. Help them to stay involved and don't allow them to wallow and completely withdraw into themselves. Identify the fact that you are concerned they may be depressed. Ask if there is anything you can do.
  • Music can decrease pain and depression - Make them a CD of songs that are special to the both of you. Bring it to them or stick it in the mail.
  • Movies - go to a show together, rent or purchase one to watch together. Distraction is important. It would be nice if the individual did not have to think about their disease or pain for a couple of hours.
  • Drop off a casserole, lasagna, soup or stew. Something that they can heat and serve on days when they are struggling and would probably not eat if it was something that required effort that they just don't have to give. 
  • Gift certificates for maid service on special occasions would be so very appreciated. Many of us cannot deep clean our homes the way we used to.
  • Write them a letter or communicate via e-mail or phone - The point is to stay in touch. Friends and family often disappear once we have cancelled a number of dates/get together's. Understand why and stick around. You will both be glad you did.
  • Ask if there is anything you can do to help. My mom comes by and cleans my floors almost every time she visits as she knows this is one task I cannot do on my own. It is so appreciated beyond what words can say.
  • If you are headed out to the store, see if there is anything you can pick up for them. Trips to the local pharmacy are also greatly appreciated.
What else can you think of to add to this list: Please share in the comments section. If you are an individual with a chronic illness what can your friends and family do to try to understand what you are going through and to support you.
Suggestions for topics you would like to see just add them to your comments. The 30 blogs in 30 days is going to be a challenge :)

© 2011 Rhonda


  1. Wonderful blog post. Many great ideas for family and friends to read and practice. Any bit of help is always welcomed on my part from anyone. I tend to be a type A personality and still try to do everything myself. So when anyone comes along and just does something....anything...without me having to ask...I so appreciate it.

  2. Deb,

    Thanks for the feedback! I totally agree there really couldn't be anything that somebody offered to do that I would be so very appreciative of! I too think I can still do it all myself and boy oh boy do I learn the hard way! It is so nice to have someone offer to do something otherwise I end up feeling like a burden by having to ask for help. Thanks so much for your comment!