As challenging sports go, pro boxing is in a class of its own.
A literal assault on the body, the sweet science requires tip-top physical condition, fast feet, a powerful punch and a mental game that doesn’t quit. So when boxer Sarah Thomas started having fevers and felt exhausted, she tried to play through. But eventually, that become impossible and after 18 months of testing and doctor visits, she learned she had a rare autoinflammatory disorder called Cryopyrin-associated Periodic Syndrome (CAPS). For a while Roberts not only kept boxing, but she kept winning, making her eventual departure even tougher.
Uplifting Athletes, a nonprofit organization that raises funds for rare disease research, recently shared Sarah’s story, which you can read here: A rare disease fight that changed professional boxer Sarah Thomas
We asked Jodi Taub, a New York City therapist and a rare disease patient, for advice about letting go of an identity due to a health problem.
What do you suggest during these times of major transitions, which impact not only what a person can do, but their sense of who they are and who they thought they would be?
First and foremost, recognize that this process is a journey. The path to receiving a rare disease diagnosis often takes a longer period of time than other known diseases. Some people may deny their symptoms, hoping they may go away. Others know that something is wrong and fight to receive a proper diagnosis, which takes tenacity and perseverance, but it also can be incredibly challenging and disheartening.
No one wants to be sick and live with physical ailments. Initially, some people may feel relief having finally received a diagnosis and some expectations of treatment and prognosis. At the same time, it can feel incredibly devastating, as one faces a very different reality that they have planned for their whole lives.
What should patients keep in mind as they work through it?
1. Give yourself time to process the diagnosis. You need time to grieve the idea of the life you had anticipated. There is a tremendous loss in realizing that you may have to give up and change things you once loved. Validate your hurt and loss. Attempting to deny your feelings can lead to shame, anger and resentment. You deserve to have a moment to feel this way.
2. Acceptance takes time. The initial shock can feel overwhelming. However, with time, you will accept the outcome, and find ways to cope with your health care condition. Finding a proper medical care team, establishing supportive physical and emotional help from your community, and learning how to integrate health care management can help support this process.
3. Hold on to hope: Remember that you have already been living with the symptoms, and often diagnosis can lead to treatment and better ways of managing disease outcomes, which can change the course of your symptoms.
4. There is always opportunity for a new path. Although you may face physical and time limitations, which may alter your ability to participate in recreational activities you once loved, or occupational educational pursuits, this does not mean that you can't try something new, which may not negatively impact your health, but may be just as satisfying. It may allow for investment in other talents, career options and relationships.