Do you have a loved one who was recently diagnosed with a condition such as Type 1 Diabetes, Multiple Sclerosis, or Crohn’s? Conditions like these are part of a family of 80 + diseases caused by autoimmunity, and they are often connected genetically. What’s more, being diagnosed with one of them can happen to anyone at any age.
If you find yourself in this situation, you may be nervous to begin a conversation with your loved one about what they’re going through, what you can do to support them, and how it might affect your relationship.
The reality is, while 1 in 15 Americans are living with an autoimmune disease, it’s not something we talk about very often. They are chronic diseases, lifelong diseases with no known cure. Knowing what to say can be daunting, but you should feel encouraged to engage freely – and respectfully – with the person you care about.
Opening up the conversation starts with challenging your assumptions – about the disease and how it will affect them. Here are some tips to overcome those assumptions and engage with your loved ones in a helpful and meaningful way:
Ask if they want to talk.
Even if talking seems natural to you, it may be exhausting for the person who’s just been diagnosed. Ask if they want to talk with you, and be respectful if they say no. In this case, take the time to sit with the reality of the situation and let your loved one do the same. This may be together, but it may also involve space for each of you.
Be a good listener.
Listening is a powerful tool. If they do want to talk, make it your job to listen to what they have to say. After all, their experience is firsthand, and in many ways the most important. Rather than bombard them with questions, let them take the conversation in the direction they’re most comfortable going.
Admit what you don't know.
It’s okay to not have all the answers. How could you? But it’s far better to admit what you don’t know rather than offer false or unfounded reassurance. Try to be honest and straightforward about your knowledge or concerns, but be careful to watch out for and respect your loved one’s boundaries.
For instance, you may know that if you have one autoimmune disease, you may be more susceptible to another. While this is good to keep in mind, it probably isn’t the time to share this with someone who’s just found out they have one in the first place.
Then, take some time to learn about what they’re up against. Check out information and resources from organizations like BRI, the American Autoimmune Related Diseases Association, and other credible medical sources.
There’s a lot of misinformation out there about autoimmune diseases, and these stereotypes can be tricky to dispel. Voicing them, however, may stop your conversation before it’s even started.
Take Rheumatoid Arthritis (RA), for instance. Many people associate the word arthritis with joint pain in seniors, but that’s what’s known as Osteoarthritis. RA is in fact much more serious, causing patients to experience systemic joint pain from the immune system eating away its own tissues. Being clear on distinctions like these is critical to making your loved one feel understood.
Or what about Crohn’s Disease? Just like several autoimmune diseases, Crohn’s doesn’t have a physical manifestation, so many with the condition often hear “You don’t look sick.” While their symptoms aren’t visible to those around them, people living with Crohn’s may experience things like intestinal inflammation or abdominal pain and bleeding. They also need reliable, 24/7 access to a bathroom. Knowing this, imagine how devastating those words could be!
Find out what they acutally need.
Despite your best intentions of being supportive, what you may think to offer isn’t necessarily what your loved one needs. Inaccurate assumptions about what will help may lead to uncertainty and distrust, which is the opposite of what you want in this new situation. Instead of overwhelming your loved one with support they haven’t asked for, take the time to ask questions and listen to what they really need. Even if they can’t show it right now, it will make a world of difference.
Remember that you are in this together.
Before you jump to conclusions about what your loved one’s condition might mean for your relationship, take a moment to think about the bigger picture. Give it your best effort to avoid placing blame, making the situation about you, or worrying about what comes next. At the end of the day, it’s about listening and believing each other with open minds and hearts. That’s how you’ll figure out a way forward together.
March 29, 2018
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This blog does not provide medical advice, nor is it a substitute
for professional medical advice, diagnosis or treatment.