Adapted from an open discussion by members of the Myositis Support Group of Hospital for Special Surgery
In a discussion on self-advocacy, we focused on how those with myositis recognize their own needs and the benefits of voicing them to others. The group talked about the challenges of advocating their needs as well as some helpful tips on self-advocacy. The group focused on negotiating relationships in four different categories:
- Medical Community
What is self-advocacy?
It can mean that you are confident in speaking up for yourself with others. It can represent knowing your needs and negotiating techniques to make them happen. It can refer to questioning things that you do not understand in order to receive enough information to comprehend them, and it can refer to knowing your rights and making sure you receive any resources or services that you are entitled to receive.
- Medical Community
The group discussed the importance of knowing your rights as patients. One member asked whether or not a patient that needed an ambulance could designate the hospital to which they prefer to be taken. A group member shared an experience in which an ambulance took them to a low quality hospital, explaining that it required days of advocacy work for her to be transferred to a better facility. The group was unclear about their rights, and all agreed that it would be important for them to know what they are so they can be prepared if they are in an emergency situation. Several members mentioned that they would research a patient bill of rights to learn more.
Another area where the group felt they could advocate for themselves more actively was with their healthcare provider. When speaking with a doctor, one group member suggested that you should always ask open-ended questions. A patient could ask the doctor, “In what ways could my mobility improve with this medication?” rather than “Will I move better after taking this medication?” It is also helpful to take notes when at a doctor’s visit, or even use a tape recorder. A diagnosis of myositis can mean that you have several different doctors or medical providers on your treatment team. By asking questions and clarifying the treatment information from one provider, you can best advocate for yourself when attending visits with another professional.
A group member said that her doctor provided her with an email address. When she has a question, she can just email the doctor and since he checks it regularly, he addresses her question in a timely manner. Email communication allows her to receive a quicker response to her concern and decreases the chance she will forget to ask the question at her next visit or worry about the answer until she visits with her doctor.
The group agreed that advocating for themselves among friends can be complicated. A group member talked about the worry of ruining a friendship if too many details about her symptoms of myositis were revealed. Another group member talked about her fear of rejection. She said that some of her closer relationships have become more distant after her diagnosis. Another group member said that friends often do not know about the myositis, and if they did, they may not care. The group distinguished between a friend and an acquaintance. The group decided that they tended to be more private about their myositis with acquaintances but that the risk of rejection was much higher in friendships; they were slow to share about the myositis with many of their friends as well.
Another group member shared that she had a friend who was really helpful to her when she was diagnosed with myositis, and was supportive of her needs. The friend was aware of her fatigue and muscle weakness, so when the friend began to deal with a health issue of her own, she distanced herself. It seemed that the friend did not feel that a person with myositis could be helpful to her in the same way she was a helpful friend. The disabilities associated with a chronic condition like myositis can be straining on many different types of relationships.
Despite the fears described above, the group maintained that it is important to foster relationships with friends and to find social outlets. Whether it’s with old friends or new friends, or even another friend with myositis, spending time on fun activities and in great conversations can lift your spirits. You may be surprised to find compassion and understanding from someone you didn’t expect.
Change is hard. When a family member is diagnosed with myositis, the rest of the family may expect or want the person to continue performing the same role in the family as before. This is when open and honest family communication is the most important. The group talked about how family functioning depends on which family member is affected with myositis, whether it’s the breadwinner, child, father, or mother. The group also talked about how a family member with an illness can bring the family closer or break them farther apart. The illness can reveal divides that were already present, and the person with myositis should not have to take all the blame.
A group member talked about how others in the family really did a lot to help out and change roles, but there are still things that could be better. She feels if she complains too much about the things not being done, then she is taking away from those things that her family members are doing. The group gave examples of ways it may be necessary to weigh the pros and cons of expressing one’s needs. Just like in many situations, you have to choose your battles. However, if the needed change is a daily occurrence, it may be imperative that it is discussed. Sometimes the other person had no idea and will be amenable to the change with no questions. Others may put up a fight and eventually give in. Others just may not want to change at all.
Sharing details about your experience with myositis can be done in a positive way. You could talk about what you have learned about yourself and the strengths you have seen. Others in your family may also be noticing the change in you or in themselves, and it could be helpful to discuss the positive aspects that you have realized in each other since your diagnosis. For example, you may notice a compassion in another person that you had not experienced before and it could be nice to tell them that you noticed. Though you may be the one exhibiting strength in coping with this disease and want others to applaud your efforts, sometimes you must give compliments to receive them.
One group member follows the advice of a trusted friend: “You are your own best advocate.” In order to be your own best advocate, it can be helpful to know as much about your condition as possible. Support groups are a great way to learn about your condition and to gather valuable resources. Those who actively participate in their healthcare decisions often will take better care of themselves and are more likely to comply with treatment therapies. By understanding the benefits of various treatments, it can motivate you to follow them.
You can imagine that if your reactions to having myositis were shock, anger, grief, or fear, that others close to you may be feeling the same way. Acknowledging your own feelings about myositis may be helpful in expressing your needs to others. It is difficult for others to understand how to best help and support you if they cannot comprehend how the condition truly affects you. Individuals coping with a chronic condition like myositis can tune into their own wants and needs so that they can confidently share them with others. A group member told the group about a saying that if everyone were to throw all their problems into the center of the room and told they could take anyone else’s problems instead, almost everyone would take their own problems back.
For individuals with a rare illness like myositis, it can be helpful to learn self-advocacy techniques or to have a close friend or family member advocate on your behalf. A diagnosis of myositis can leave a person feeling out of control; however, advocating for oneself can allow a person to feel they have more control over their life. Anyone can benefit from recognizing their needs and finding ways to have them met.
Myositis Support Group at HSS
Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.
Summary by Angela Hunter, LMSW