7 Things Chronically Ill People Want You to Know

Today, I have to attend the funeral of a 38-year old principal. I attended the wake yesterday. I have not been to a funeral in close to 10 years. When you say “grief.”  Ah! The following post from Norissa is really  real and informative… and so timely. -k

Please note each chronic illness is different. In this post I am only writing regarding my experience having a chronic autoimmune disease.

 1. There’s a difference between chronic and terminal.  I’ve seen many a dropped jaws when I’ve mentioned that I’m dealing with a chronic illness. People often confuse chronic with terminal, and think I’m dying (like, tomorrow). However, rest easy, the term, “chronic,” just means life long/long term. “Terminal,” means that it will result in death.  While some chronic illnesses are also terminal, this is not the case with all chronic illnesses.

2. I’m not always sick. When you hear of sickness, it is easy to imagine someone laid up in a bed or curled on the floor somewhere in fetal position, but the truth of the matter—for me at least—is that I have good days as well as I have bad days, so don’t count me out.

3. I’m not always well. While there is a delicate balance in understanding that a chronically ill person is not always sick, it must also be understood that they are not always well. Nobody wants to be someone’s sad, sick, always-in-need, friend, but it is nice to be asked every once in a while, “How are you feeling these days?”

4. How I look is not always an indicator of how I feel. Once you begin to experience chronic health issues, you begin to develop a, “new normal.” If you asked me years ago how I felt, if I experienced the discomfort I currently experience on a daily basis it would be noteworthy. However, there are many things that no longer rise to the level of mentioning because they have become a part of my regular existence.  Furthermore, when you have an invisible illness—where everything on the outside looks fine—it’s easy for people to forget that you even have challenges, but though I look fabulous 😉 it’s not an indicator of how I feel.

5. Understand that my energy levels may not be the same as yours. When I say, “I can’t,” or,  “I’m tired and drained,” know that my, “tired and drained,” is not your average tired and drained. So even though I most certainly want to climb Mt. Kilimanjaro with you…today, I just can’t.

6. My tears aren’t always because I’m hurting.  The truth is, most people never see my tears. I seem to always experience the most discomfort when I’m alone, and yes…sometimes I cry. The thing is, though one would imagine it were about pain. My tears are often for one of two reasons; a) I’m afraid. “Does this pain and inflammation in my eye mean in a few years I won’t be able to see?” or b) I’m a 30 something year old woman I will never get used to feeling disabled or like, “I can’t.”

7. Stop forgetting. All-to-often, people I’ve told on several occasions, seem to forget that I’m sick. While it is understandable because I look fine and you don’t see my at my worst, it’s a bit demoralizing to have to repeatedly answer, “Because, I’m sick. Remember?!”

8. Empathy and validation goes a long way. People don’t know how to feel, what to think or how to act when someone is chronically ill. Know that sometimes, plain old empathy and validation, “Wow, that must be hard,” or, “I can understand why you feel that way,” is enough.

Frugalistas, have you had challenges dealing with someone who is chronically ill or are you chronically ill yourself? What are some other things we should know? Comment below.

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