You’ve been wondering for months about your child’s random symptoms and pain. Nothing you ever knew about kids and growing up helped you understand what was going on. Even your doctor was at a loss. And then you get the lab tests back. A diagnosis, finally: Primary Immunodeficiency Syndrome (PI). Relief? Maybe, for a split second. Your child’s diagnosis is where the roller coaster really begins.
Primary Immune Deficiency ranges from requiring occasional maintenance medication to a full-time debilitating condition, and the diagnosis is unsettling for anyone. Naturally, it’s frightening if your kid has it. Whatever emotions you are dealing with—be sure not to add guilt to the mix.
Perfectly Okay and Normal Reactions to a PI Diagnosis Include:
- “Not my child!” Denial is a normal early reaction. No one plans to have to deal with primary immunodeficiency diseases when they are picking baby names and saving for college.
- “Why me?” A sense of injustice comes with most serious diagnoses, and you can hardly be blamed for feeling neither your child nor the rest of your family deserved to be randomly affected by the disease. The brutal truth is: Sometimes bad things happen to good people, and the next stage is dealing with it.
- “The doctor must be wrong!” A variation of denial again. It is fine to question a diagnosis; it is even a good idea to get a second opinion. However, only once you’ve embraced acceptance will you be able to become an advocate and aide for your child.
- Optimism. In the face of uncertainty, some people assume the best. “It’s a misdiagnosis,” or “it’s surely the mildest form of the disease.” This is fine; it’s a healthy way of dealing with bad news, and optimism is proven to be an attitude best suited for a long, healthy, and happy life. Just make sure you save some energy for dealing with the illness and don’t waste it all on trying to “correct” facts.
- Undue pessimism. In contrast to the notorious optimists, some people have a natural tendency to assume the worst when faced with a dire health prognosis for their child. Nobody can blame you for pessimism, although you should be aware that negativity is inherently destructive. Don’t give up hope. No matter what prognosis your doctor has given your child. There are kids with PI who’ve grown up to be movers and shakers as adults. With proper treatment, your child might live to retirement age. He or she might grow up to have children and even see the birth of their grandchildren.
A diagnoses of any of the primary immunodeficiency diseases can be frightening, but when it comes to your child it can seem even worse. An immune system disorder is manageable in this modern age. The earlier a medical plan of care is established, the better the prognosis.
Come to Terms by Developing a Course of Action
Having a plan and being armed with as much knowledge about the illness as possible is key to helping you and your family come to terms with this new and unwelcome diagnosis. One of the resources you may want to check out is the Immune Deficiency Foundation, a great resource for up-to-date information and events concerning the illness.
- First study the illness. Knowledge is power and you are going to be a go-between and advocate for your child when it comes to doctors and experts. You will need to know your stuff and it will likely make you feel at least a little more in control of the situation.
- Don’t be hesitant to join a support group for primary immune deficiency disorders, and primary humoral immunodeficiency.
- Let go of any guilt you may feel. Now. It will not do you or your child any good.
