7 Things Your Doctor Won't Tell You When You're Diagnosed With Chronic Illness

No one tells you your life will never be the same when you’re diagnosed with a chronic illness. No one tells you that all aspects of your life will be affected in some way, shape or form. Unfortunately, it’s the reality and nature of being diagnosed with a chronic illness. For me, everything changed from being able to do certain things to losing friends.

When doctors diagnosed me with multiple chronic conditions, they didn’t tell me I’d lose friends or that I wouldn’t be able to brush my teeth standing up any longer. If you or someone you love or know lives with chronic illness or multiple chronic conditions, keep in mind that they’re experiencing a world of change and they weren’t given a guide or manual on how things in their lives will change.

Here’s what doctors and professionals don’t tell you when you’re diagnosed with chronic illness:

1. You will lose friends.

Some may accuse you of lying when you can’t go out. They might say you’re exaggerating or accuse you of just not wanting to hang out with them. There may be some friends who drift away until they become a distant memory of what your life was before your diagnosis.

2. You will not be able to, at some point throughout life, perform daily activities as you once did.

No one ever told me I’d get tired when I’m straightening my hair or that I’d have to sit down at times because my body is so weak just to brush my teeth. No doctor or other professional warned me or made me aware of the fact that daily life activities that were once an automatic thought were going to become a conscious effort.

3. Establishing and maintaining intimacy in relationships will become increasingly difficult.

Does anyone know how extremely awkward it is to have to explain your health issues to a date or someone you are in a relationship with? It’s anxiety-provoking as you are never sure how a person will react to what you’re saying.

You also have thoughts about relationships and how some people may not want to deal with “the sick person.” Being young with diagnoses of chronic conditions is a struggle in terms of relationships and intimacy.

4. Many people in your life will not understand what you’re going through.

People who don’t live in your body will never understand what you go through on a day-to-day basis. People who are considered “healthy” will not understand the pain, exhaustion and fatigue you live with day in and day out.

The best thing you can do is provide them with basic material about your condition. Provide information that is clear and simple and not too medical, but provides a general overview of your condition, symptoms and how treatment may affect you.

5. Your insecurities may reach an all-time high.

You may become more self-conscious than you were before. Your illness may cause skin reactions or weight changes. You’ll be hyper-aware of these issues you never thought about prior to your diagnosis. You may isolate yourself because of these insecurities and tend to avoid any type of intimacy in order to protect yourself.

Let me be the first to tell you that there will be someone who will feed your insecurities at some point during your journey and it’s just the unfortunate reality of being young with a chronic condition. But remember, there are so many more out there who will be able to see beyond your chronic condition.

You are not your diagnosis and it doesn’t define you.

6. People you thought loved you will drift away until they’re no longer a part of your life.

Just think of this as a natural process in life because that is exactly what it is. You may take it a bit harder than if you weren’t struggling with a chronic illness because we tend to become hypersensitive and think it is all about our condition and not just a part of life that happens.

7. Friends and family may minimize what you’re going through or say you’re lying about certain symptoms and feelings.

They do not understand the exhaustion and fatigue we feel. They don’t know what it’s like to sleep for 12 hours and feel like you haven’t slept in days. The exhaustion we feel isn’t the same as if we just played a weekend of sports. The exhaustion and weakness, at times, is unexplainable.

They may see the strength it takes to brush my hair on certain days as “pathetic” or “exaggerating,” but they’re not in my body and they don’t have to live in my body day after day. Not everyone is going to understand what you’re going through or how you’re feeling. And that is OK.

You need to always remember that when someone is judging you or anything like that in regards to your physical health, it’s a reflection of their character and not yours.

Here are a few things to keep in mind for your own peace and well-being.

Some people will not be willing to learn about your condition even if they say they will. It’s not worth having someone in your life who isn’t willing to learn about you and what you’re going through.

Your condition isn’t going to be at the forefront of everyone’s mind whether it be a friend or family member. You need to remind them constantly.

You are not your diagnosis. It’ll take time to settle in and cope with but that is an ongoing process as well. Learn to separate your character and your diagnosis. It’ll help in so many ways.

There are good and bad people in the world. That’s just a reality in this gift of life. You will come across both and you need to keep reminding yourself that everyone is different and not everyone is bad. I became very bitter and angry at the world. I became isolated from everyone who actually did care about me.

I was so focused on my hatred for other people and their ignorance that I was pushing away good and decent people in my life. Let go of the ones who aren’t willing to go to any length for you and hold on tight to the ones who will and I promise you will get through this. Stronger and wiser.

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