7 Things I Want People Who Are Newly Diagnosed With Chronic Illness to Know

If you Google “living with vasculitis” or any other part of trying to figure out how to actually live with this rare disease, you will probably find very little. If you’re new to rare disease life or chronic illness life, you might be surprised. If you’ve been in this fight for a while, though, you may feel completely unsurprised or even resigned to the fact that “This is just how it is.”

Well, I am not going to resign myself to the lack of information on living with vasculitis. It’s time we elevate our voices — all of our voices — no matter what rare diseases or chronic illnesses we have. So many of us live with strong similarities between our conditions. It may be in our best interest to work together.

So what might you need to know about living with chronic illness?

1. Your chronic illness is not your fault.

One of the most important things you need to know is that your disease is not your fault. They may not know what triggers its onset. There might be genetic factors — and some possible genetic aspects of my chronic illness are currently being researched — but doctors may not really know. I know identical twins — one with multiple chronic illnesses and one who is healthy.

I grew up being fed local, organic food — mostly fruits and vegetables. I was always  athletic. I never smoked (or did any drugs at all), and I was a very light social drinker. I was not sexually promiscuous. I was in great health until the onset of my vasculitis. In my family, we actually joke that the only thing I would get sick from is my own immune system. I share all of this because these are common reasons people may use to blame patients when they become ill. I had none of these risk factors, and I still got sick young. I was only 31 when my vasculitis started.

You will probably spend some time trying to identify your illness’s “trigger.” If you do, be kind to yourself. Your illness is not your fault.

2. The grief you may feel about your chronic illness is real.

Next, you need to know that you may go through the cycle of grief about your illness. You may be mourning your life before your chronic illness and adjusting to your life as it is now. Let yourself  go through your grief. Trying to push the emotional struggle down or ignoring it may only cause you more trauma down the line. Well-meaning friends, family members, co-workers, or random people on the internet may push you to look for a positive spin on your condition, but let yourself be sad, mad, broken, frustrated, lost, and confused. I call this “sitting in the suck,” and it can be an important part of healing. Instead of trying to push yourself through the process, ask your loved ones to “sit in the suck” with you and just be present. Hold space for the roller coaster of emotions that is coming — especially as you experience the side effects of any new medications.

Often, no one warns you that the grief will likely ebb and flow. A few years in, you might have a hard time again. I call this period “secondary mourning,” and it comes with a long list of challenges, but if it happens to you, try to experience it if you can.

3. Identify your limits with your chronic illness.

If you are newly diagnosed, you may need to work on identifying your limits and listening to your body. You may never be able to do the same things you could do before your illness, so be aware of what your new physical limitations may be. You may get tired faster and recover from illnesses or injuries more slowly. This may not ever go away — even if you are in remission. Not a lot of people may warn you about this, so you may get the idea that everything will be limitless once you’re in remission, but that isn’t always the case.

4. Nutrition can be important in life with chronic illness.

Your diet may be your strongest weapon in keeping your chronically ill body healthy. Depending on where you are in your health journey, this could look like the need for a total dietary overhaul, or it could just mean a few tweaks here and there. Wherever you are, make changes slowly, and give yourself time and space to adjust to this new life. You may even wait to make diet changes until you are several months into this process. Focus on making sure you are not completely overwhelmed before you push yourself to make changes.

Even with an “anti-inflammatory” diet when I was first sick, I went all in on several lifestyle changes. I ended up in a heap of tears and overwhelm. Also, don’t give into popular “diets” that may not support your body’s needs. If you don’t reach out to your doctors to approve any lifestyle changes you want to make, you can cause more long-term damage.

5. Get comfortable with communicating about your chronic illness.

It may serve you well to communicate effectively with the people in your life. People you know may not know that you’re struggling. No matter how close they are to you, it is up to you to share with them what your needs are and what your limitations are from day to day. They may forget that you have the struggles you do or may not understand exactly how much your limitations affect you. It may feel uncomfortable to ask for help, especially if you have previously been the go-to helper, but if it feels safe, do it anyway. Your loved ones may come through for you.

6. Remember that doctors may not know everything about your chronic illness.

Doctors do not know everything. In fact, when it comes to chronic illnesses and rare diseases, they may not know much of anything. Treating your illness may be a guessing game. Before you got sick, your experience with the medical field was probably “get sick, go to the doctor, get a prescription, get better” — but now, things may be very different.

As time goes on, you may know more than most doctors about your condition and about what to do to treat it. You may even have to see several doctors before any professional even has an idea of how to help you. I have gone to see a doctor who literally Googled “vasculitis” and then tried to tell me that my symptoms of a medical struggle were part of my disease — even though I had just run lab work and spoken with my rheumatologist. I had to spend time arguing with this doctor to get them to believe me. It can be exhausting and frustrating and may also make you question many of the people in the medical field.

You may also disagree with how doctors want to treat you, and you are absolutely allowed to decline their treatment plans. The more you know about your illness and the more you are aware of what your options are, the more likely you are to get what you need. If you go into your appointment knowing that you want specific labs run or tests done, you are significantly more likely to get them done and to advance your care. If the doctor you are speaking with “can’t run those tests” because they are “outside of their scope,” they can give you a referral to a specialist who can.

7. Monitor your mental health along with your chronic illness.

There can be a huge mental aspect to being chronically ill. People with chronic illness are three times more likely to experience depression than those who are the same gender and age but don’t live with chronic illness. It can be difficult to get the support you need because many of the ways that you feel could either be either depression, your disease, or both. If you are able to get a diagnosis or get help, also be aware that many therapists don’t know how to dig deep into struggles with chronic illness. Not having enough therapists who understand chronic illness is a huge flaw in our mental health system. With that said, though, if you need help, please get help. There is no shame in asking for help. Also, be aware that you might get more comprehensive support from the chronic illness community than from mental health professionals. If you can, try to find a balance of both.

You can do everything “right” in your life with chronic illness and still struggle. It might be that you never fully reach remission. It could also be that you’ve been in remission, but you have a flare-up. No matter where you are in your chronic illness journey, though, you aren’t alone. Together, we can lift our voices and change the world.