Five things I wish I knew about an autoimmune diagnosis (or even a suspicion)

A lonely journey toward a healing sunset

I didn’t have one of those moments like you see on TV where the doctor comes in, touches you gently on the arm, and tells you of your dire prognosis. I didn’t even have a moment where my doctor told me what she thought was going on. I actually gathered up all my lab tests, my symptoms, and my research and went to ask if she agreed with what I had found. Surprisingly, she did. It took a year to get to that place. I consider myself pretty lucky. On average, people wait five years or more to finally put a name to their symptoms and develop a strategy for healing. During that year of researching, I felt pretty lost and spent a lot of time chasing rabbits into vast depths of internet research. In looking back, and in seeing how I feel now, there’s a few things that I wish I knew during that really difficult time. I’m sharing with you, hoping you’ll keep them in mind as you find your way through the challenges of your own autoimmune disease.

There is no destination on your healing journey. As long as you are alive, you're evolving, learning, changing, striving to make yourself better than you already are.

1. It is perfectly OK and important to feel angry at your body, afraid of what’s happening, and sad about the way it will change your life forever

This is the biggest lesson I’ve learned. When I first was feeling sick, I used all the energy I could muster to try and figure out what was going on. I researched non-stop. I ordered my own lab tests to see if I could help my doctor figure it out. I joined support groups. I was relentless. I jumped into all of this activity because it was easier than feeling the discomfort that comes along with knowing your life has changed forever – and not in a good way. I didn’t want to seem weak or sick to my family and friends. I didn’t want to appear that I was letting sickness get the best of me. I felt that crying about being sick was silly and unproductive. I felt like I had to be strong to ‘fix’ myself. I honestly believed that if I was just strong enough and didn’t devote time and energy to painful emotions that I could just set them aside and they’d go away.

Well, for a while, those emotions did seem to go away. Until…

I was at a business coaching retreat a couple of months ago and ended up having a complete emotional breakdown (in front of 145 people I barely knew). I was effectively curled up in a ball in the corner of the meeting space sobbing. It took three different coaches to talk me into a place where I felt calm enough to drive to my hotel. It was embarrassing. It was deeply uncomfortable. It was scary. What was most worrisome is that at the time, I had no idea why I was having such a hard time with talking about my business with other business owners.

So I sat with that feeling for several days, and here's what I discovered. I am putting myself out here as a healer, as an autoimmune expert, and I had never allowed myself to experience all those feelings that come with this huge life change. I knew they were coming up, but it seemed easier at the time to push them down and not feel them. I thought it was giving me more strength to not let myself be angry, sad, or afraid.

But it wasn’t. It was keeping me from truly healing. It has kept me from being able to get my clients to truly heal, too. So for several days, I cried. I got mad. I felt afraid. I journaled, I talked with my coaches and my colleagues. I had to be vulnerable and admit that I needed to feel emotions, to admit that I needed help to work through it, and to admit that I hadn’t healed that huge emotional hole that my autoimmune disease left in my heart.

But now that I've done that, and felt those feelings, I can let them go. They served me well, and would have helped me along the way if I had allowed myself to feel them.

You'll never fully heal without addressing physical health, mental health and the deep needs of your soul

2. You probably know more about what’s going on than your doctor

A doctor seeing a woman patient and discussing treatment options. You can also see your herbalist and get natural options to support your body's own way of healing rather than relying on pharmaceuticals that alter your body's function.

This is not to say that your doctor doesn’t know what’s happening. It doesn’t mean that your doctor is incompetent. It doesn’t mean that your doctor doesn’t WANT to help you get better. It simply means that you’ve done an inordinate amount of research in what’s causing YOUR disease. Autoimmune disease is often called a ‘snowflake’ disease, because the way it presents is different in everyone. While there are some common symptoms, everyone will have a slightly different set of symptoms. There’s thousands of things that your doctor is trained to treat, and most of them can be satisfactorily addressed with standard treatment protocols. Your doctor spends most of her time treating the conditions that show up regularly. It’s unrealistic to expect your doctor to spend as much time reading about the intricacies of your condition as you have.

This is actually a GOOD thing. Because you have done the research, you know what’s happening in your body and you can have a conversation with your doctor as your partner on your health journey. You can share what you find and ask for her input. You can request certain tests and explain why you think they’re helpful. You can suggest a treatment plan and get her support.

If your doctor isn't receptive to being your partner, then you should work to find one who is. Any doctor insistent on always being right or being the only one who knows what to do is doing a huge disservice to their patients. With insurance, I know that it can be difficult to switch providers. It’s worth investigating what else you can do.

3. People will probably avoid you

When you have a chronic illness, especially one that doesn't have any physical signs, your friends don’t really know how to treat you. They want to be good friends and support you. They want to help if they can. It’s hard to know what to do. You probably have some unusual dietary needs, which means they don’t want to invite you for a meal in case it would make you sick. You have probably given up drinking alcohol, so they don’t want to invite you for a girls’ night with wine. You are tired, withdrawn, and hurting, so they don’t want to make you feel worse by highlighting all the things you’re missing. Or maybe they are having a hard time understanding just how much you hurt – since you still look like you did before your disease set in, and you’re always telling people that you’re ‘doing okay’ even when you’re not.

Your family may also withdraw from you for the same reasons – or maybe they withdraw to let you try to rest and get better.

The most difficult reason why people avoid you is that they are uncomfortable with feeling uncomfortable. No one likes to feel like they’re helpless to make an impact. We’re not practiced in keeping space for people in suffering and discomfort. And this is the reason that hurts the most. Because really all you want in this time is for someone to tell you that you will come through this. You want someone to tell you that you’re still loved and still a valued part of your family and friend circle.

It is perfectly ok to ask for what you need.

If you want to go to lunch with your girlfriends, then YOU pick a place and invite them to join you. If you want a quiet evening watching a movie with your partner, then let them know. Interactions when you have chronic illness have to be on your terms, so you need to step up and ask for what you would like, and always give yourself the out of cancelling at the last minute if your day has been a huge struggle. Just communicate. Your friends and family will understand.

4. Now, more than ever, you need to make sure you rest, eat well, and keep moving (gently)

A nourishing homemade meal with soup and vegetables

When you have a busy family life, and a job, and a social agenda, it’s tough to schedule time to care for yourself. If you’re exhausted and in pain from your autoimmune disease, there’s even less motivation. You push through the days, get the stuff done that you can, then collapse into bed late at night for a fitful, unsatisfying rest.

You're waiting for the one thing that will magically make this better. The pill, the treatment, the vitamin – there must be something to fix this, right? Well, there are some promising treatments on the horizon, but they aren’t yet ready for your doctor to prescribe. For now, the best approach is to eat well – in a way that nourishes your body and avoids foods that create more problems for you.

You need to rest – more than you think you do. A full night’s sleep of 7-9 hours is essential. See what you can offload or stop doing to allow yourself to get that rest. Turning off the TV is a great start!

You need to keep moving. I know it hurts. I know it makes you tired. Movement keeps your lymphatic fluid moving, and that helps your body clear out the pathogens and toxins that are in your system. It also keeps your muscles strong, your joints mobile, and your heart engaged. Start with a 5 minute walk at lunchtime and see if you can extend that to 30 minutes over a month or so.

Portrait of beautiful young woman enjoying summer in a field.

5. You will get through this

This first period after finding out you have an autoimmune disease and even the period when you’re waiting to find out is tough. The good news is that there is a place where it starts to settle in. There’s a place where it stops feeling so overwhelming. There’s a place where you find a radical acceptance of who you are NOW. From that place, you can look back on this time of pain, anger, and sadness and realize just how far you have come. You can appreciate the person you’ve become through all this and see just how powerful and amazing you are.

You can look back and see how powerful and amazing you are