Chronic conditions are …well…Chronic. Conditions don’t take holidays, they are often invisible to those around you, and many people will try to “FIX” you. I am not avoiding doing things with you, my not feeling up to doing something is not an excuse – it is a legitimate reason as to why I am not going. So with that being said let’s talk about what not to do or say to a friend or family member with a Chronic condition:
Quick Fixes:
Your comments may come from a good place but often they may be hurtful or frustrating to someone who is trying to deal with life with a chronic condition. Saying things like “You are probably stressed”, “Have you tried yoga (or some other activity that relives stress)?”, “Maybe it’s just mind over matter”, “you should go vegan (or keto or fast or whatever diet trend is popular)”
Trust me when I say that people who must live with a chronic condition have tried it all. This isn’t generally a quick-fix situation…and for many, it is a lifelong, incurable condition.
Positivity:
Generally, we love positivity! Being positive can certainly be helpful for our resiliency, but not everyone is naturally positive. Even if you are a naturally positive type, chronic illness can get you down. Very few people living with chronic conditions want to be bombarded with requests to stay positive, especially on hard days when we feel our worst. It is 100% okay to feel the way you feel. My Mother always told me “Feelings are never right or wrong, they just are.” You are allowed to feel sad, frustrated, angry, or scared. There’s a point where the push for positivity becomes toxic, and it is not possible to deny the reality of the situation. Go ahead and feel what you feel, just don’t unpack and live there.
We are not “Lucky”:
“It must be so nice not to have to go to work/school!”, “It must be nice to stay at home all day”, “It could be worse!” Just don’t. We are not lucky. We are in pain, exhausted, and frustrated. Chronic illness, pain, fatigue, or other disability can have a huge impact on every area of someone’s life. Laying in bed, not enjoying a special occasion, missing out on family functions or vacations….who thinks that is “lucky”? We didn’t ask for this and we certainly don’t want it, but we have to manage the hand we’re dealt. Being ill is also expensive and time consuming. 10/10 do not recommend!
I am Unique:
Each of us has our own experience when it comes to chronic illness. We may have the same condition but experience very different realities. Chronic conditions are complex and multifaceted and so are we. Your mental health, your history, your support systems or lack thereof, your financial situation, your personality, your perspective, your medical team, your pain and sickness tolerance level, and any potential comorbid conditions you live with will further complicate the experience. There are varying degrees of severity for most illnesses, just as there can be varying types of symptoms. There are overlaps with symptoms or conflicting conditions. For example…I have several autoimmune conditions (my immune system works overtime and attacks me) as well as Immunodeficiency ( where I don’t produce antibodies and can’t fight infection/illness properly) – these two conditions are at odds. When I take an immunosuppressant to help my autoimmune conditions, I am at greater risk of infection/illness due to my CVID (Common Variable Immunodeficiency). So don’t expect my Rheumatoid arthritis to act like your Aunt; ‘s or my Sjogren’s to behave like your coworker’s, because we are all unique. Stop comparing us to people you know.
I am Always feeling Guilty, don’t make it worse:
Guilt…we often experience more than our fair share. Guilt about being a burden, guilt about not being a better Parent, spouse, coworker, etc. Guilt for the worry and stress our condition causes others. Guilt for canceling plans. Guilt for not getting things done. Guilt for struggling, being weak, being exhausted. Guilt for being “an expense”. We feel guilty taking time off from work. We just feel like we are letting people down or are lacking in some way. We feel like we are asking for “special treatment” when we have accommodations. Some people may question the validity of a chronic illness unless they can visually see it. Doctors may second guess your symptoms. Others may wonder (or even ask) “is it really that bad?” The questions and second-guessing are likely from ignorance and lack of understanding rather than judgment, but that doesn’t make you feel any less guilty.
We are also guilty when we feel good! Guilt for doing something fun when you are feeling good, will people think I was faking? If people see us feeling well and thriving they may not believe that we’re chronically ill. The unpredictability of chronic illness plays a part in this. One day you can’t get out of bed, the next day you are running errands and baking cookies. Some days your symptoms flare and others you feel pretty stable. One day you need a mobility aide, the next you don’t. All of this makes us feel like we look like we are faking or lying are about how bad things are.
