Coping Emotionally with Bone Marrow Failure Disease

Here, we present information for patients, families and caregivers on ways to effectively cope with the onset and continuation of bone marrow failure conditions – aplastic anemia, MDS and PNH. Although a disease diagnosis is an unwelcome life event, developing a positive attitude about managing stress and worry, undergoing treatment, and enjoying a life that may now have certain limitations – these are all critical elements of coping with (and succeeding in) living with bone marrow failure diseases.

Most important, is to realize that while building and managing ‘living well’ skills, there will be ups and downs – a rollercoaster ride of emotional stages corresponding to progress and setbacks.

What are normal reactions to diagnosis of a chronic illness?

It is normal to experience a range of emotions when you receive a diagnosis of bone marrow failure disease. Often progressing through distinct stages, you may experience:

  • Shock: “I didn’t really feel bad”, might be your first reaction when bone marrow failure disease is first confirmed and you have been feeling well.
  • Worry:“What does the future hold?” Looking ahead you wonder about what your life will be like in the coming weeks, months, and years.
  • Confusion: “What does all this mean?” You want to know exactly what is happening and why.
  • Betrayal/Anger: “How could my body have failed me?”. Although you have had occasional physical ailments, you never have had a serious condition and feel that your once-reliable body has betrayed you, and is no longer “you”.
  • Resolve: “I can deal with this – passive acceptance is not an answer”. It’s perfectly normal to experience all of the above reactions, but when you decide to move beyond them and learn the habits and skills of the “powerful patient”, you are taking your first step towards living well.

Reacting to your reactions – your attitude is critical to making the first step in learning how to build coping skills

Each of the above reactions is ok to have, but how you choose to respond to them will partly define how you cope with your illness.

  • Choose to manage stress and worry - although these can never be totally eliminated, they can be managed
  • Choose to move ahead with your life -although your life has changed, you can still take one day at a time and focus on the necessary things you must do, and the elective things you want to do.
  • Choose to enjoy things you have always enjoyed - realize that although things have changed with your physical condition, your interests, hobbies, relationships, and most professional skills are still there, and with exceptions concerning physical activity, you can attend to them.
  • Choose to find new areas of support – you don’t have to cope alone. Beyond family and friends, help is available from patient support organizations (such as AA&MDSIF), church communities, professional help such as trained social workers, psychologists, community counseling services, and informally organized support groups.

Learn to recognize and control depression and anxiety caused by chronic illness.

With the major challenge of a chronic or even life threatening disease, patients can easily become depressed and/or anxious about their new health circumstances. The key is to be able to recognize the symptoms and take appropriate action.

Symptoms of depression

  • A period of sadness or despair that lasts 2 weeks or more
  • Loss of interest in previously enjoyed activities
  • Feeling helpless, hopeless, isolated, and overwhelmed
  • Inability to concentrate
  • Problems with eating, sleeping and general daily functioning
  • Problems with anger and interpersonal relations
  • Increased use of alcohol or drugs

Symptoms of anxiety can coexist with depression, and may include feelings of fear, phobia panic, and obsessive-compulsive behaviors, in addition to ones associated with depression.

Build a positive attitude by reframing assumptions, attitudes and expectations

Make progress towards your goal of living well with bone marrow failure disease by identifying your life situations you have control over and the ones you don’t have control over. By making concrete, stepwise action plans for the ones you do, and not spending precious time and energy in areas you can’t control, you can focus on making your best possible life and getting the best possible health care.

  • Examine your options in the situations you have control over
  • Don’t spend time imagining scenarios that will probably never happen

Educate yourself and be prepared for medical visits and treatment

The “powerful patient” resolves to be an integral part of their healthcare team, rather than a passive bystander to their own treatment.

  • Learn everything you can about the disease and your treatment options. It will help you feel informed and empowered, as well as enable you to ask better questions of your doctor. If you don’t have a copy of AA&MDSIF’s patient education booklets on Understanding MDS, Aplastic Anemia or PNH, be sure to order one now.
  • Bring a list of questions to ask when you go to your doctor. Write them down when they occur to you -- don’t rely on trying to remember them. For help getting started, visit the Questions are the Answer Web site. This site, provided as a service by the Agency for Healthcare Research and Quality, provides tips to help you build a personalized question list.

Find support from others – give support when you can

Finding and receiving emotional support and comfort should be a foundational part of your coping strategy and there are numerous options available. Among these --

  • Support Connectionk: Call AA&MDSIF’s Patient Educator at (800) 747-2820 who can answer your questions, listen and connect you to a trained volunteer through our Support Connection Network. Here, people just like you are talking, sharing, and supporting
  • Marrowforums: This is an online discussion forum for people affected by bone marrow failure diseases. Through this Web site you can connect with patients and family members, ask questions about topics related to bone marrow failure diseases and read how others have dealt with difficult situations.
  • PNH Support Forum: This is an online discussion forum for people affected by PNH. Through this Web site you can connect with patients and family members, ask questions about topics related to PNH and read how others have dealt with difficult situations.
  • You can complete the circle of support by offering your support to others in need. Pass along what you have learned -- your experiences and ideas – to those who are just building their own support network. One way to do this is by being a AA&MDSIF Support Conection Network volunteer. You’ll find giving -- as well as receiving – support helps you feel fully engaged in your plan to effectively cope with chronic disease.

Stay connected with friends and supporters

  • Designate a spokesperson to keep everyone in your network updated about the condition. This lets you and your closest caregiver/spouse/parent/child stay focused on taking care of you first, and the immediate concerns that require your attention. Your spokesperson might be a family member, a friend, a member of your religious group who you might update on a regular basis so they can reach keep extended family and friends informed on your behalf.
  • Consider starting a free personalized web page through Caring Bridge.