We Need To Talk…

We Need To Talk…

A factor that can contribute greatly to your emotional and overall health when dealing with a diagnosis of an autoimmune condition is the support of those close to you. The first step is having a conversation with them about your diagnosis. The more understanding they have, the better able they will be to support you effectively.

It can seem intimidating to open up about something that has such a large impact on your life. Autoimmune conditions are notorious for having a range of symptoms that affect patients with the same condition differently. Therefore, although it can be tempting to simply pass on links to informative websites or brochures it is better to discuss your condition in person with those close to you. You will need to relate your own personal story and symptoms in order for your friends and family to gain understanding of how this impacts you as an individual. For many, the best approach is one that is open and forthright. Here, we discuss some helpful ways to handle these conversations.

Give Them the Facts

It may be difficult for people who care for you to hear that you have a serious condition. It can also come as a surprise as many autoimmune conditions, particularly early on in their progression, do not have obvious symptoms. Having an “invisible illness” can make it difficult for others to understand and accept that you are sick. Although it should not be relied on as the sole source of information, as it won’t give them the whole picture, it can be helpful to give your loved one’s resources that they can use to educate themselves on the basics of your condition. With so much information readily available it will be important to direct them to reliable and trustworthy resources so that what they learn is accurate.

Give Them Time to Process

Just as you experienced a range of emotions when you received your diagnosis, so will those close to you when they hear it. Be prepared for denial, anger, fear, frustration, and sadness as you speak to them about what to expect and what the diagnosis means for you as an individual. It may take them time to digest everything they have heard. Be prepared to give them time and space to reach a place of acceptance. They may inundate you with questions. Don’t get frustrated. After all, you probably had to ask many of the same questions when you received your diagnosis. Try to be patient, even when you have to answer the same questions time and again. If you try to rush them to this point it could lead to hurt and misunderstanding on both sides. It is also important to remember that, yes, you are the one with the condition, you are the one experiencing the symptoms, but you are definitely not the only one who will be impacted by your diagnosis. So try to look at things from their point of view. It is easy and understandable to become wrapped up in your own emotions and physical symptoms and it may require effort on your part not to ignore the experiences of those around you.

Avoid the Blame Game

We sometimes take out our emotions on those closest to us. As you deal with your diagnosis and the symptoms of your condition, it may cause you to lash out at those around you causing them to feel defensive. It can be tempting on a bad day to respond to a request questioning why they always ask you to do things when you are already feeling weak and unwell. Instead of phrasing it as such, consider rephrasing your thoughts and words. State how you are feeling followed by a request of what could help you in that moment. You live with your condition twenty-four hours a day and will know your body well. No matter how hard those around you try, they cannot read your mind and won’t always be aware that you are struggling. Open communication channels can go a long way to ensure conversations are productive. Remember they want to you help you they might just not know when and how to best do so.

Get Them Involved

It can be helpful to invite those that actively participate in your care to come with you to see your doctor. Here, they can ask questions they may be nervous to ask you directly and it can be helpful for information to be delivered from someone with authority in the matter. It removes the emotions that underlie your personal relationships. Don’t expect loved ones to automatically know what you need and when you need it. It is up to you to share with them what you are struggling with and advise them on how best they can help you. If you don’t clearly indicate specific actions they can take, even with the best intentions they may not recognize what you need. Certain aspects that are helpful to you, such as Yoga or Pilates to assist with joint and muscle pain, may be something you can do with a friend or family member. Not only will this make you feel less alone in your journey, but will be beneficial to them as well.

An autoimmune condition may make it necessary to shift responsibilities and for family members to take on roles within the family that they are not used to. This can cause resentment if not handled thoughtfully. Set aside time to specifically and constructively talk about redefining each person’s role in the family. Your condition does not mean you are incapable of being an active contributor your family, but it may mean that you need to adjust the way in which you contribute. Don’t make blanket decisions about these roles. Discuss what your limitations are as well as what you are able to do and ask your family members what they would feel comfortable changing.

Your Role

Relationships can become strained if time is only spent focusing on the difficulties faced due to an autoimmune condition. Make sure that you encourage and speak to your family about participating in enjoyable activities, together and separately. Reassure your family that while there may be activities that you can no longer do, it does not mean you cannot support them in activities they enjoy. A friend or family member may feel guilty talking to you about something they enjoy because they are concerned for your emotional well-being if you are no longer able to do these things. You can acknowledge that you miss certain activities but assure them that you harbor no resentment for their pleasure. Conversations and relationships are two-way streets, so make sure that you acknowledge the needs and wants of your friends and family. They may not have an autoimmune condition but will still have their own challenges to face. Reciprocate and provide support when you can. This will show them that you care and appreciate the relationship you have with them. An additional benefit is that you will also feel more positive as you are helping those you care about. 

Any difficulty or challenge can make relationships with friends and family vulnerable to strain and arguments. Working through disease-related stress requires attention to the feelings and needs of each person involved. The best way to achieve this is to have and maintain open channels of communication. Given that your loved ones may be unsure of how to approach you, it may be up to you to start and encourage conversations about your diagnosis. A strong base of support can mean the difference between conquering your diagnosis or have it conquer you. Talking to your loved ones can help ensure you do not face a difficult challenge alone, so start an ongoing conversation.


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Article Author
Arthritis National Research Foundation

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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