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5 Things about Living with an Invisible Illness Few People Understand

February 16, 2016

Marisa Zeppieri

This is a guest post by Kari.

Living life with an invisible illness can be extremely frustrating. You may feel as if no one understands you and often times might feel alone. Daily you may find yourself hurting and in some kind of pain.

You’ve learned to live your life by just smiling and saying you’re fine, when inside you’re screaming and about to break down from the weight of it all. In your mind there may be a million things you would like to say but then you suddenly don’t know how to word things just right.

Living with an invisible illness can make you feel isolated for many reasons. If you have an invisible illness, it is important to remember that you are not alone. There are many people, including myself, who live with an invisible illness.

Here are 5 things about living with an invisible illness that few people understand (i.e., those who are healthy!):

5. The Future Is Unpredictable

When you have an invisible illness, the future becomes unpredictable. It makes many people feel afraid of what might happen. Depression might kick in from not knowing what is coming down the road. Having an invisible illness such as lupus, a flare could happen suddenly. You might be having a great day when pain just comes out of the blue. The pain could be so bad that you find yourself going to the hospital, only to have them tell you that they can’t find anything wrong. You might miss days of work from it and then, without any warning, the flare or pain leaves. It leaves you feeling confused.

The future is unpredictable. Friends may distance themselves. Some people won’t know what to say. Other people might not understand that you are doing the best you can right now. This is what you want them to know but can’t figure out how to explain it. You are scared of what might happen but you’re not going to go down without a fight. Knowing that the future is unpredictable and out of our hands can help our anxiety lessen when something goes awry unexpectedly. Being flexible is key!

4. Your Hobbies and Goals in Life May Change

Due to your life being unpredictable you are often times forced to change your hobbies and goals. You might even have to change your entire career or college plan due to your illness. Life has changed. You’re doing the best you can with your career, hobbies and your goals and you want people to know this. If you could have stayed on the same path then you might have but maybe, just maybe ,you’re on this path for a reason.

Do what makes you feel comfortable. Do what makes you happy and works with your health conditions. You’ll be surprised at all of the doors that could open once you change your goals and mindset.

3. People Always Seem to Give You Unsolicited Medical Advice

One thing that I have personally learned is that people always seem to give you medical advice. Some even think their advice could instantly cure your invisible illness. They might even get upset if you decide to not take their medical advice or politely tell them, “No thank you.” What they might not understand is that you are doing the best that you know how to do for your body and health at this time. You understand more about your invisible illness and your body than someone else does. You have to be careful with what you take and ingest because it could cause a flare up or unwanted side effect. You appreciate the fact that people might be trying to help you but you’re really doing everything you can for your health and body.

Sometimes it’s better just to walk away from people who might not understand this or continue to give medical advice without fully understanding your problem. In most cases, people mean well and want to see their loved ones feel better. If you continue to stay friends, just thank them kindly for their advice but explain that it’s something that you are trying to work out with your medical/nutritional team. Also, if a health tip from a friend seems interesting, tell him or her that you will look into it but won’t make any promises regarding trying it.

2. You are Stronger for Giving up Your Independence

A lot of people do not understand how much independence a person with an invisible illness has to give up. You might feel weak and helpless because of your pain. However, believe it or not, your pain and having to give up some of your independence has made you stronger. Before, you might have found yourself being able to run errands, be out all day and do things but now, it’s hard to even get out of bed. You use to feel embarrassed about needing help but now you’re grateful for help whenever it comes.

You are strong and you want others to understand that you’re in the battle for your life. You don’t plan on giving up anytime soon and you’re hoping that others will be loving, kind and patient as each day is different.

1. Lupus Might Only be One of Your Health Issues

A lot of people who have lupus often times have other health problems. Lupus is just not the only problem I personally have. I have thyroid problems, bicuspid aortic valve, GERD, IBS, Lymphedema and a few other issues. Medication often times works against my system. I did not know this for many years and always wondered why I got so sick after they gave me medications.

Talk with your doctor and be completely honest. This is the best way they can give the proper diagnoses on your medical conditions and prescribe you the best medication. You want others to know that it’s not all in your head and  sometimes you just want to be around someone who will truly listen. You’re tired of the pain and you’re doing everything you can to figure out what is wrong.

Bottom Line

Continue to stay strong. You’re not alone in your battle. In fact, within just the LupusChick community you have thousands and thousands of women and men who “get it!” Spoil yourself as much as possible and laugh whenever you can to help ease some of the pain. Be flexible and be prepared to answer questions and educate when  you are speaking to someone who doesn’t understand what you are going through.

Here at Lupus Chick, our mission is to help you live a thriving Autoimmune Life

Learn more about us >

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