Blog
Mental Health Awareness & Rare Disease Questions
Answered by Doris Dahdouh, Licensed Social Worker and Integrative Nutrition Health Coach
In honor of Mental Health Awareness Month this May, I sat down with the Executive Director, Deanna Fournier, of the Histiocytosis Association to answer some heartfelt and important questions from the Histio community. What made this Q&A so special is that these questions can truly resonate with anyone navigating a rare disease or struggling emotionally in any way.
The interview is broken down into short reels. You can find them available on the Histiocytosis Association’s Instagram and Facebook pages. You can also find the full version on the Histio YouTube page tomorrow. For those who prefer a written format or want to revisit the discussion, I’ve included the questions and summarized, more brief answers below. I encourage you to check the videos out for my spoken and original answers and share them with anyone who may benefit.
Question 1: How do I cope with the constant uncertainty of my condition?
Answer: This is a sensitive question filled with a lot of emotions. As humans, we have a fear of the unknown, and when dealing with a rare disease, the unknown is lurking in the distance—even with a diagnosis. The best thing to do is simplify the situation. Remind yourself that it’s normal to have fluctuating emotions and reactions because each day will be different. Your symptoms may also fluctuate, so it’s important to treat yourself with the utmost gentleness. Tell yourself it’s okay—and believe it. You will learn what you need to learn in its time. We were never meant to know everything all the time. So even if there were an abundance of “certainty,” it would most likely overwhelm you. Treat yourself as you would a child—with tenderness, love, and care.
Question 2: How do I process the grief of what my life used to be—or what I thought it would be?
Answer: Grief in all forms is difficult. Some may not give space for grief with illness, but it’s just as important, if not more. The grief and loss of what your life used to be and what you thought it would be are difficult to face because it seems to always be staring you in the face. But you can process it the way you would any other kind of grief—with time.
The five known stages of grief—denial, anger, bargaining, depression, and acceptance—come in different orders and sometimes even simultaneously, except for acceptance, which is the final stage. Acceptance can be seen as a form of achieving closure. To get there, you have to go through the other stages, sometimes all at once.
If you used to be a runner and can no longer run like before, let yourself go through denial, anger, bargaining, and depression. If you crave revisiting that time, find someone to reminisce with. Tell stories, look at old photos or videos—do it. If you need someone to talk to—a friend, family member, coach, spiritual leader, mentor, or mental health professional—reach out. Create a memory box: letters to your former and present self, mementos, photos. Allow yourself to be angry, and when you feel down, extend yourself some grace.
If any of these symptoms impact your ability to function, please seek professional help. Expression helps you avoid staying stuck. Then, find something small that brings you joy or gratitude—and do it often. That’s where healing begins.
Question 3: How can I find hope again after another setback or relapse?
Answer: This is a great question because it means you’re still looking up and forward. The question itself shows that you know hope is still possible. Remind yourself how you got through the last time. Be specific about your resilience.
Be gentle with yourself and give yourself a “grace period,” because you may need a little more time this time around. Do small things that bring you peace and comfort, alone or with loved ones. Breathe through the tough moments and let go—this helps release tension and toxic feelings. You’re ready. Give yourself permission to exhale.
Question 4: What do I do when I feel like no one understands what I’m going through?
Answer: This is an unfortunate reality. Many people won’t understand. No one is you, and you aren’t anyone else. Some may try to help by listening or offering support like meals or rides. Others may act differently or not understand when you explain. Remind yourself that even you and your medical team barely understood it at first—how can others?
Extend grace. Ask if it would help to explain in simple terms. If they’ve offered help, tell them exactly how they can assist. Sometimes it’s just about saying, “I know you don’t understand, but please just hear me out.” Most people avoid discomfort and may minimize or dismiss what you share.
Avoid people like this if you can. You often already know who they are by how they’ve shown up in the past. Keep things simple with them and remind yourself that they are limited.
Find support from those who get it—like the Histiocytosis Association Peer-to-Peer group. And when all else fails, talk to a coach, mentor, or mental health professional.
Question 5: How can I help my friends or family understand what I need emotionally?
Answer: This starts with simply telling them, though it may not be easy. Some people are limited in their capacity to meet emotional needs. Some even get triggered by their loved ones’ struggles.
Choose wisely who you confide in and how. Some are better with listening; others prefer action steps. You can write or record your message to give both you and your loved ones, time to process. Don’t seek emotional support from someone who has never been able—or willing—to give it. Be real with yourself and stay grounded in what has always been true about your relationships.
Question 6: How do I maintain a relationship or make new friends when I don’t feel well most of the time?
Answer: It’s important to prepare yourself for the effort required when you’re not feeling well. Let your current friends know you may have days when you’re not available to talk but that you care about them.
Have messages ready to send when you can’t talk for long. Prepare them for brief check-ins and short calls or visits. When making new friends—through support groups, Meetup, or events—be clear about your desire for connection. Let them know you have a diagnosis that may sometimes affect your availability.
Let them see you’re serious about friendship—invite them over for tea, go out for a meal if you can. Just prepare others so they’re not surprised if you need to cancel or cut things short.
Question 7: What do I do when I feel anxious before every medical appointment?
Answer: Preparation is key. Find what calms you—deep breathing, music, smiling—and do that beforehand. Try to quiet intrusive thoughts that spiral you into worry.
In the days leading up to the appointment, talk to someone, journal, or move your body for 15 minutes to release “feel-good” endorphins. Remind yourself that it’s normal to worry about what you don’t yet know. And when you do know, you and your care team will face it together.
Question 8: Are there grounding tools or routines I can use when everything feels out of control?
Answer: Yes, absolutely. Many people find grounding in nature—being around trees, greenery, or water. Try different breathing techniques: belly breathing, nostril breathing, or the 4-7-8 method.
Visualization, guided imagery, or revisiting peaceful memories can help. Prayer, journaling, and freewriting like “morning pages” (a tool created by Julia Cameron in her book The Artist’s Way: A Spiritual Path to Higher Creativity) are powerful tools.
Creative activities like painting, cooking, coloring, or even blowing bubbles can restore focus and calmness. Spend time with children or grandchildren. Do anything that helps you feel centered, safe, and more like yourself.