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

Here are some lessons I’ve learned that I wish I knew 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 go into many of these in more detail in other posts.

1. Finding a good doctor is very important.

It took me awhile to realize that I needed a doctor who I could trust, who could see me regularly, and who was responsive to my concerns. I also realized that I needed to find someone who specialized in inflammatory bowel disease, or who at least saw many patients with the disease. Since I didn’t like my first doctor and my health insurance limited my options, this meant switching insurance. I realize that this is not possible for everyone. Yes, it was a pain to switch insurance and doctors. But it was worth it in the long run to find someone who I trust to manage my treatment.

2. I need to be my own advocate. No one else is going to do it for me.

I am responsible for taking care of myself. This means finding the care I need, being assertive with doctors, asking the questions I need to ask, looking into any accommodations I need at work, asking for help from friends and family when I 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 my job to take care of myself. No one else is going to do it for me.

3. Medications have scary side effects. They can also make me 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. 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 of the prednisone I’ve taken, but I wouldn’t trade in the times I’ve felt much better because of it. It helps to have a doctor I trust to talk to about any concerns I have regarding medications.

4. The internet can help, but can also be terrible.

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. I’ve learned to be careful when searching for information about IBD. Sometimes I’ll have someone else google something for me. That way they can filter the information 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 my illness. Sometimes it can be terrifying to hear what others are going through. If I had joined a support group when I was first diagnosed and my disease was more mild, 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. I’ve learned to know myself, and be careful on the internet.

5. There is no “right” diet.

I have driven myself crazy trying to figure out the perfect diet. 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. I have figured out some foods that trigger my symptoms that I avoid. For the most part, I try to eat healthy with the foods I can tolerate. But I don’t go crazy trying to find the perfect diet and I try not to be too hard on myself when I slip up and drink a milkshake even though I know they upset my stomach. When I struggled with this, talking to my doctor and a good dietitian helped.

6. My friends will understand and want to help.

They may not have heard of IBD or understand all of the details. But they did understand that I was sick and were happy to help. I was scared to tell my friends, but when I finally did I was overwhelmed with gratitude for the support I received. Sharing my disease with my friends felt like a weight off my shoulders.

7. Some people will say insensitive things sometimes.

Someone might tell me I look good, and it annoys me because I feel like crap inside. Someone at work who I didn’t feel like sharing my illness with would constantly ask why I didn’t do yoga anymore (I didn’t have the energy). Someone close to me asked a few days before I was hospitalized if I was sure it wasn’t just anxiety and I was getting myself all worked up for no reason. I try to remember that they have good intentions and that we all say insensitive things sometimes. Then I just try to ignore it.

8. I don’t owe anyone an explanation of my 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. I know I am under no obligation to tell anyone anything about my illness. But I found that people were sympathetic and willing to help.

9. Taking care of myself is important.

I mentioned this earlier but it’s important enough that it needs its own bullet (and post). It can be hard dealing with a chronic illness, and depression and anxiety are common. I have a mental list of the things that make me happy and relaxed, so that they are easily accessible to me when I need them. It includes TV shows that reliably make me laugh, reading, country music, meditation, exercise, and calling my sister. Therapy has also been helpful to talk about what I am going through and come up with coping strategies. I have learned not to feel bad for taking the time I need to take care of myself mentally and physically.

10. This is not my fault.

I used to drive myself crazy with what-ifs. If I had been less germophobic growing up, would I have gotten this disease? Did I cause it by all those times I put my water bottle in the dishwasher, even though it was supposed to be hand washed? 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 my fault. All I can do is make a plan to deal with it going forward. And be nice to myself.

11. I am 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. I didn’t have to suffer alone. There are many support groups out there, both online and in-person. The Crohn's and Colitis Foundation 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!