11 Things I Wish I'd Known When I Was Diagnosed

Here are some lessons I’ve learned that I wish I knew four years ago, when I was first diagnosed with a chronic illness. I was in denial then, and it took some time for me to figure out what I was dealing with. I plan to go into each of these in more detail in future posts.

11. Finding a good doctor is very important.

You need a doctor who you trust, who can see you regularly, and who is responsive to your concerns. Ideally it should be someone who specializes in the disease that you have, or at least treats many patients with the disease. If you don’t like your doctor and your health insurance limits your options, I recommend looking into switching insurance. I realize that this is not possible for everyone. Yes, it is a pain to switch insurance and doctors. But it is worth it in the long run to find someone who you trust to manage your treatment.

10. You need to be your own advocate. No one else is going to do it for you.

This one goes along with #11. You are responsible for taking care of yourself. This means finding the care you need, being assertive with doctors, asking the questions you need to ask, looking into any accommodations you need at work, asking for help from friends and family if you need it, and focusing on self-care. Do not feel guilty doing these things (am I the only who feels guilty doing these things?). It is your job to take care of yourself. No one else is going to do it for you.

9. Medications have scary side effects. They can also make you feel better.

I have been scared to start every medication I’ve tried, including the mild ones. I was terrified to go on prednisone, and my doctor did nothing to alleviate my fears (see #11). Eventually I learned to trust that if my doctor was prescribing a certain medication, it was because the benefits outweighed the risk of side effects. Side effects can sound scary. They’re also usually pretty rare. I have yet to regret trying a medication because of the side effects. I still worry about all the prednisone I’ve taken, but I wouldn’t trade in the times I’ve felt much better because of it. If you have concerns about your medications, find a doctor you trust and talk to them about it.

8. The internet is your friend, but also your enemy.

There is a lot of information available on the internet. Some of it is helpful and accurate and thorough. Some of it is inaccurate. Some of it is scary. Be careful when searching for information about your disease. Sometimes I’ll have my husband google something for me. That way he can filter the information for me and tell me what I need to know from a reputable source. Support groups and social networks can also be either scary or helpful. Sometimes it can be really beneficial to get support from others with your disease. Sometimes it can be terrifying to hear what others are going through. If I had joined a support group when I was first diagnosed, I think I would have hidden under my bed and never come out. As my disease became more severe, I became more interested in hearing how others deal with the challenges they face. But sometimes it’s still too much and I need to disconnect for a few days. Know yourself, and be careful on the internet.

7. There is no “right” diet.

You can drive yourself crazy trying to figure out the perfect diet for you. I certainly have. I really really wanted it to be as simple as changing the way I eat and I would miraculously be cured. But sometimes it’s not that simple. Different foods cause different reactions for different people. If you can figure out some foods that trigger your symptoms, that’s great and you should definitely try to avoid those. If you can eat as healthy as you can with the foods you can tolerate, then great. But don’t go crazy trying to find the perfect diet and don’t be too hard on yourself when you slip up and drink a milkshake even though you know they upset your stomach. If you’re struggling with this, talking to your doctor or a dietitian is a good place to start.

6. Your friends will understand and want to help you.

They may not have heard of the disease you have or understand all of the details. But they will understand that you are sick and want to help you. I was scared to tell my friends, but when I finally did I was overwhelmed with gratitude for the support I received. If your disease has become a big part of your life, then sharing it with your friends can feel like a weight off your shoulders.

5. Some people will say insensitive things sometimes.

Someone might tell you you look good, and it annoys you because you feel like crap inside. A casual acquaintance may ask you continually why you never go to yoga anymore. Someone close to you might ask you if you’re sure it’s not just anxiety and you’re getting yourself all worked up for no reason. I try to remember that they have good intentions and that we all say insensitive things sometimes. Then just try to ignore it.

4. You don’t owe anyone an explanation of your illness, but sometimes it makes life easier.

I didn’t tell anyone at work for awhile. But there came a point where I had taken so much sick leave, it was easier to just tell my supervisor and coworkers what was going on. And it made things easier. They were understanding, and I worried less about what everyone was thinking. If you are not comfortable sharing the details of your disease with someone, you are under no obligation to tell them anything. But you might find it makes things easier and that people are sympathetic and willing to help.

3. Taking care of yourself is important.

I mentioned this in #10 but it’s important enough that it needs its own bullet. It can be hard dealing with a chronic illness, and depression and anxiety are common. Think about the things that make you happy and relax you, so that they are easily accessible to you when you need them. It can be a favorite TV show, book, music, meditation, exercise, calling a friend or family member, anything that will cheer you up when you need it. Therapy can also be helpful to talk about what you are going through and come up with coping strategies. Do not feel bad for taking the time you need to take care of yourself mentally and physically.

2. This is not your fault.

You can drive yourself crazy with what-ifs. If I had been less germophobic growing up, would I have gotten this disease? Is something I’m eating making my symptoms worse? If I had switched to a better doctor earlier, would the disease have never gotten this severe? What happened in the past is past. Some people get sick. It isn’t your fault. All you can do is make a plan to deal with it going forward. And be nice to yourself. You are stronger than you know.

1. You are not alone.

The CDC estimates that half of all adults – 117 million people – have one or more chronic health conditions. When I started telling friends about my disease, I was surprised how many knew someone else with IBD or another autoimmune condition. You don’t have to suffer alone. There are many support groups out there, both online and in-person. The CCFA is a great resource for those with IBD, and I’m sure there are similar organizations for other diseases.

What about you? What lessons have you learned that you wish you’d known when you were diagnosed? What resources have helped you cope with having a chronic illness? Share them in the comments!