After receiving a diagnosis of cold agglutinin disease (CAD), you may experience emotions that range from relief to shock. You also may go through the stages of grief, which is completely normal.
The following overview may help you understand what to expect, and how to cope with any emotional responses to your diagnosis.
Loss of what you’d envisioned
Primary CAD, the cause of which is unknown, usually manifests later in life. As a result, the disorder may have come along just as you were achieving a career pinnacle, planning extensive travel, or looking forward to retirement. Some of your plans may be impacted by your diagnosis.
If you have secondary CAD, which develops due to another underlying condition such as a viral infection or cancer, you now will have multiple disorders to manage. You may be concerned about what this may mean for your day-to-day life.
Overall, a diagnosis of CAD can cause grief over the loss of the life you’d imagined.
You may become fearful that you won’t be able to properly function as a spouse or parent, and/or that your diagnosis will overwhelm your family. However, feeling and sharing such fears and emotions can help you find the inner strength to be open with family about your condition and how best to move forward.
If you are working, you may be fearful of how CAD may affect you on the job. Again, sharing your concerns may help you determine how best to move forward.
You may experience guilt, an emotion that people feel about things they have done in their lives that they perceive as bad. Guilt can often come from asking questions such as “Why me?” or “What did I do to deserve this?” It may be hard to accept that some things have no explanation. You and your loved ones should be allowed to express such feelings.
Whether you developed CAD as a result of an underlying condition or the disease occurred spontaneously, you may experience a period of denial that you even have a chronic condition, particularly if the diagnosis took a long time.
As a normal and necessary part of grief, denial may be helpful in that it can give you time to summon the strength and support to deal with your new situation.
Anger is a common stage of grief. You may be angry at those who diagnosed you, or you may become irritable with family members. Insignificant events may suddenly seem important and disastrous.
Keep in mind that anger may be caused by feelings of powerlessness or loss of control.
Anxiety and Depression
Thinking about the changes to your family life after a CAD diagnosis can bring panic or anxiety. Perhaps you’re mulling a move to a warmer climate, but don’t want to uproot your family. These emotions can actually help you gather and focus the energy necessary to adapt.
Acknowledging anxiety and fear of the unknown can be helpful to families during this stage. These feelings are normal, and you should feel that you have every right to them.
Depression is another normal part of grief. Now that you have received a diagnosis, you may benefit from talking with a counselor or other healthcare professional.
In this phase, you may start to notice that you and your family members are finding ways to adapt to your condition. You also may start to develop new ways of enjoying life and each other again.
Expect that major events or changes, such as a job loss or an inability to perform a favorite activity, can trigger lingering feelings of grief.
There may be times when the breadth of your healthcare or strained family dynamics overwhelm you. During these times, you may find it helpful to connect with others in similar situations through organizations and support networks.
Last updated: Jan. 21, 2020
Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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