Living with a rare disease diagnosis is an emotional rollercoaster. On top of the physical management of the condition comes managing tremendous levels of uncertainty, mental health, feelings of isolation, financial burden, and social stigma. Rare disease patients are challenged at every turn.
You may feel fed up or resentful—tired of the routine or constant to-dos, making managing a rare disease feel like a prison sentence. Time might feel wasted or as though it's running out. Or maybe you feel confined to your diagnosis as your identity.
All these emotions are normal but may be identified as differentiation—a term used to describe the process of separating your personal feelings and thoughts from those of your partners, friends, or other intimate networks. In simpler terms, it's about not letting others' emotions or actions affect your own.
Differentiation may sound simple, but this ability is not innate and rarely used.
Paul-Roy Taylor, a clinical psychologist, shares in a Choosing Therapy article, that emotions like anger, lust, sadness, and jealousy can override thoughts and actions. “The higher the level of differentiation, the higher the ability to acknowledge these feelings without becoming misguided by them,” Taylor explains.
What is differentiating?
Differentiation is about separating from those close to you and taking responsibility for your actions, feelings, and beliefs. For instance, differentiation in practice looks like if a friend is upset, you might feel empathy for them, but you don't let their emotions dictate your own. The way people process differentiation varies and may be more challenging for rare disease patients.
There are a few common characteristics that suggest the differentiation process is in action.
- Not as willing to accommodate
- Feeling angry, resentful, irritable
- Aware of dreams lost or ignored
- Feeling incomplete
- Questioning decisions
- Pushing back, speaking up
Why is Differentiation Important for a Rare Disease Patient?
Experiencing differentiation is ongoing, but doing so, especially as a rare disease patient, empowers you to say no, set appropriate personal boundaries without guilt, identify your opinions, and increase confidence. Differentiation is about taking control of your life and feeling secure in your decisions.
Experiencing differentiation may be a sign you’re coming into your own, redefining your life, or starting a new chapter. It's a healthy task toward personal evolution, but according to Bob Taibbi, L.C.S.W., as shared on Psychology Today, here are a few tips to do it well.
- Avoid feeling consumed by resentments and daily irritations. Focus more on your goals without getting overwhelmed by the details. Specifically thinking about what you need most. Don’t think about the things you don’t have yet, but what do your aspirations tell you about what you need right now?
- Speak up. No long rants are needed but do have calm conversations about what’s missing and how you envision your future. As a rare disease patient, it may be difficult to imagine the future too far ahead, so focus on a realistic timeframe with your future vision.
- Create a plan. Outline how you plan to achieve your visions for the future and include an alternative plan to accommodate any changes in your diagnosis or condition.
- Get support. You don’t need to forge a new path alone. There are people around you who support you and are ready to help. Lean into them and let them be your strength.
