“We couldn’t find anything wrong with you. Your lab work is normal. Set up an appointment to come back in six months.”
I remember standing outside my office building where I had gone to take the doctor’s call in private. I just stood there, frozen in time, feeling lost and in a void.
After months of going to numerous doctors and trying different medications for the pain and swelling, the doctors couldn’t find anything wrong with me. For nine months, I had been looking for an answer to all my symptoms without explanation. Upon hearing the “we couldn’t find anything wrong with you” statement again, I couldn’t stand to think that I would have to wait six more months with joint pain, swelling, and itching with no answer.
I had put my hope in this Rheumatologist to give me an answer, but after that phone call, I was left hopeless and told to wait.
Can you relate to hearing – there’s nothing wrong with you.
Like many people with autoimmune conditions, you may be searching for an answer to your symptoms, or maybe you finally got an answer, and now you are in between diagnosis and the next steps. Is there any help or hope out there? Yes.
Emotional support for autoimmune disease is a multi-faceted process. No one person or thing can give you all that you need. Emotional support for autoimmune disease takes a team approach, and you are the team leader.
Emotional support for autoimmune disease starts from within
Don’t stop searching for answers when you know something is wrong with your body, mind, or spirit. In my case, even though the doctors said I was fine, I knew something was wrong. When every joint hurts making it difficult to walk, and your ankles and feet swell up so much that you have to buy new shoes, you know something is not right. You know that something is wrong when you develop visible symptoms and when the pain on the inside shows on the outside.
So, I continued my quest for an answer and to find help and hope. I made an appointment with another Rheumatologist, and after another round of tests, she couldn’t find any definite answers. However, she discovered that I had a positive ANA result and that it may be the autoimmune disease called Scleroderma due to my finger and hand swelling symptoms.
She said that I could wait another six months or see a specialist at the Michigan Medicine Scleroderma Clinic. Luckily, I only lived an hour and a half away from the university. I quickly called for an appointment but was disappointed to learn that it would be three months before I could get in to see the specialist. However, three months is better than six months.
The journey to healing begins
Finally, my appointment day arrived! I wrote out notes of what I wanted to tell the doctor. I knew I would be nervous, and finding an answer, help, and hope was important. Upon reading my notes to the doctor, he said, “Yes, you have scleroderma.” Finally, an answer! He knew exactly how I felt and what was happening to my body.
The doctor ordered extensive tests. I would return for CT scans, pulmonary function tests, walking tests, and echocardiograms the following week. Finally, I was taking medication, and my healing journey began. Now that I finally had an answer, I had found a sense of peace.
Gathering your team
When you face any crisis, you may feel alone, like you are stuck on a boat with no paddles, but please know that you are not.
In the case of receiving an autoimmune diagnosis, this is when you start to gather your team of players to support you. However, remember you are the team leader! You are in charge and are the leader of how the game plays out. There are people and abundant resources available to you, and it is your job to gather all of them on your team. Your team consists of physicians, your inner circle, and others who share the same experience.
Emotional support for autoimmune disease through your physicians
Your team of physicians may or may not provide you with emotional support. Technically, emotional support is not their primary goal. Their goal is to give you help and hope through medicine. However, it would be best if you held on to the mindset that they may not be able to provide you with 100% emotional support. To believe that they are the source of emotional support is unrealistic. Most physicians are trained to heal the body, not the mind.
My recommendation is that you become close to your physician as much as they have the capacity to do so. Be kind, open, and vulnerable with your physicians to do your part with how they play the game. Remember, their role is to heal the body first, hoping the mind will follow.
Ask your physician for a therapist’s recommendation to help you talk through the acceptance and changes you are experiencing. Remember, you are the team leader gathering resources for your best self. Your physicians will appreciate that you are in charge.
Emotional support for autoimmune disease through your inner circle
Your inner circle consists of those closest to you, such as family and friends. They are the first line of providing emotional support for autoimmune disease sufferers. For your inner circle to offer you emotional support, they need to learn as much as possible about the disease. Please allow them time to learn about the condition. Send them links to websites or give them brochures you may have received at your physicians.
In my discussions with clients, I have found that family and friends can be a source of great emotional support; however, their role also comes with limitations. The most significant limitation is that your family and friends honestly don’t know what you are going through physically and mentally. They may expect you to be the same as before the diagnosis. Your job as a team leader is to manage expectations by communicating honestly about how you are feeling and what you can and can’t do. Alternatively, your family and friends need to be honest about what they are thinking and how they feel. Open and honest communication will open the doors to obtaining a balance in your relationships and avoiding misunderstandings.
Emotional support for autoimmune disease through shared experiences
You may feel alone and that nobody else knows what you are going through, but that is not true. There are people out there who share the same experiences as you. Remember, you are the team leader and need to get the right people on your team.
As I began meeting people with the same diagnosis, I felt a little more normal and less alone. Belonging to a group of people with shared experiences helped me feel comfortable again and gave me emotional support for autoimmune diseases through our shared experiences. The ability to talk about our symptoms, treatments and shared experiences gave us hope. When we got together, we would complain, critique the doctors, and share our feelings, but most importantly, we laughed.
Three ways to find support through shared experience
There are three main ways to get emotional support for autoimmune disease shared experiences, online, support groups (in-person and online,) and one-on-one. I recommend all trying out all three ways to help you learn what is out there and to find what works best for you.
To start, ask your doctor if he knows of support groups or other patients that are open to connecting with other patients. I asked my doctor, and surprisingly he said yes! He knew of three different patients that were trying to meet up. Unfortunately, due to HIPPA laws, he could not put me in direct contact with other patients, but I was able to attend a fundraising event, and that’s when I met my first group of people.
Online support
I will briefly mention this avenue of support, but please don’t let this be your only support system and be cautious. There are a lot of Facebook groups and online forums (Inspire) that you can join for specific autoimmune diseases. I only mention this avenue because it exists, and you will encounter this type of online support. Please know these groups can be a negative and scary place.
You don’t know the people on Facebook who claim to be living your experience. They may not even have the same condition that you do. People will try to sell you a miracle cure, supplements, diets, and even t-shirts. For example, these scammers pretend to have your disease, create a t-shirt saying something like, “I’m a Scleroderma Warrior,” and then post that they just bought a new t-shirt and you can be a warrior too. Here’s the link to buy one. Please don’t believe everything you read, be careful with whom you interact, and don’t buy anything.
Support groups online and in-person
A simple online search will bring up support group meetings or local chapters of national foundations for your condition. If you are seeking support groups, go in with the mindset of checking out the group to see if it fits your needs. Here are some questions to ask yourself:
- Do they have the same diagnosis? Some will say they will but do not.
- Do they share the same values?
- Are they welcoming?
- Are they a group of complainers or a lively group with a supportive growth mindset?
- Do they educate on essential well-being topics?
During the pandemic years of 2020 and 2021, many organizations had to conduct virtual support group meetings, which were a great way to connect with others while on lockdown. These online group meetings are a fantastic way to meet local people and people worldwide. However, I believe virtual meetings can’t fully replace one-on-one in-person meetings. Virtual meetings can be awkward and cold, making it challenging to share true feelings because you can’t get complete visual clues through body language and facial expressions.
Remember to find what works for you! There are no one-size fits all support groups. Instead, support groups may be a place to connect individually with like-minded people, bringing us to one-on-one support.
One-on-one support
One-on-one support with like-minded people who share your experience is invaluable. As mentioned above, reach out to your doctors first. Ask them if they know anyone who would like to connect with another patient.
Sharing real-life experiences one-on-one with someone who is or who has gone through your situation is priceless. Together you and the other person or small group can think through issues, encourage one another, and help each further take control of your lives and healthcare. Together you can face the problems and cope with emotions that are natural to the process.
Ten years later, I still haven’t let go of my team. The physicians, family, friends, online and in-person support groups, and one-on-one support each have a role to play on the team. I have met some wonderful, caring people that have walked with me through this journey, and I have walked with them on their journey. When you create a team, be prepared to play on someone else’s team playing the position you are best suited to play.