You just returned from the doctor’s office with a diagnosis that will undoubtably change the rest of your life. It did for me. I unfortunately got my news over the phone during an already stressful time in my life. The third biggest snowstorm was in the beginning stages in Chicago and I was just desperate to get home safe after a long week of work.
It felt as if I went to bed one night and woke up as a totally different person. My head was spinning, scared of what the future may bring. A year later after my diagnosis, I’ve learned so much about myself and the people around me. I’d like to share with you some valuable tips on how to get through the next fourteen days of your life after diagnosis.
Day One through Three– Millions of things are going through your head right now. Will you be able to continue to work? How will this affect your marriage or current relationship? Will you be able to have children one day? Or if you do have children, will you be able to take care of them in the same capacity?
First, I recommend that you arm yourself with all the information that you can find about Lupus. It is the disease of many faces and can affect each individual very differently. When I was told that I had Lupus over the phone, my first reaction was, “What is Lupus?” Since I was in a vehicle at the time, I only received limited information on my cell phone’s browser. I got home that night and searched until my Sjogren’s eyes burned.
Arming yourself with information is a great way to educate yourself but you should exercise extreme caution. Along with helpful information, you will hear horror stories of what this disease can do. At an already vulnerable time, it is important that you realize that Lupus affects each individual very differently. Lupus can mean joint pain and a skin rash for you while it means kidney failure or seizures for another.
Second, you need to decide who you are going to share your diagnosis with. Your immediate family members are undoubtably the first people on your mind. Are you going to share the information with your friends? Relatives? Co-workers? Your boss? There are pros and cons to revealing that you have a chronic illness and everyone’s situation is different. I have encountered nothing but support from my family and true friends. My job, on the other hand, was willing to accommodate me at first, but it didn’t take long before I hit a few roadblocks.
I don’t recommend sharing the news with just any and everybody yet. I lost a very dear friend of mine (or so I thought) because she just lost two parents to illness and couldn’t stand by and watch another person die. I looked at her incredulously. I’m not on a deathbed yet and Lupus is highly treatable. She was acting as if I had already been given my last rites.
Be careful as to whom you share your diagnosis with. Not everyone will understand what you’re going through and it could cause an even more stressful situation for you. I’ll explain in a few more paragraphs.
Days Four through Six- If you are already showing symptoms of this disease when you got diagnosed, you may feel vindicated. You may feel this way because you may have had a growing suspicion that there was something wrong with you for a while. Some may have labeled you crazy or a hypochondriac. Now that you have an actually diagnosis, it may feel as if a large weight has been removed from your shoulders.
I went through this exact thing. I was always tired, even after sleeping ten or twelve hours. I had these strange fevers and body aches. I thought that I was coming down with the flu every month! Now that I had a name for what was making me sick, I can fight this, right?
Rheumatologists deal with connective tissue disorders such as lupus. Your physician may set up an appointment for you or give you a referral for a specialist. You must do your homework in this area. There are some horrible doctors out there and not enough good ones. Dealing with incompetent doctors is probably more frustrating than dealing with Lupus on its own. If you’re not getting proper treatment, this could be detrimental to your health. A disease as unpredictable as Lupus needs aggressive management, which includes a medical team that is on the job.
During this time, I recommend that you sit down with your health care professional and devise a plan tailored just for you. This is where you should speak up and let your doctors know what you expect out of them. Your doctors should treat you as a person and not just the disease. Doctors that undermine you or don’t take your symptoms seriously need to be dropped like a bad habit.
Days Seven through Ten–Word of your diagnosis is starting to roll through the rumor mill. You may start to receive phone calls or emails with words of encouragement, sympathy, or even curiosity. Your loved ones may have a very mixed reaction to the news. Emotions from anger, denial, grief, and even humor should be expected.
Words of encouragement are almost always followed by people with good intentions wishing to ‘cure’ you. I have heard everything from drinking a glass of wine everyday, vitamins, herbs, supplements, oxygen therapy, vegetarianism, and even drinking my own urine to cure me. During the first few weeks, I was inundated with these suggestions, most of them from loving people who just wanted to help. Even though your own knowledge of the disease may have been limited before, some of the same people that you explain lupus to, will suddenly become experts on your disease. Their sources? Their aunt’s cousin’s first husband has lupus and he’s doing just fine with his diet of seaweed and grasshoppers. (I have truly heard it all).
I strongly recommend that you join a support group. There are many online chronic illness communities that I’m apart of. It helps to surround yourself with people that understand what you’re going through and know that you’re not alone. Until September of last year, I didn’t know anyone in real life with Lupus so no one around me could relate. It helped that I talked at length with people online.
Days Eleven through Fourteen--In the rare circumstance that you received your diagnosis during possible organ failure or a life threatening illness, it could be difficult in the coming years to tell just how your lupus will affect you. Many have a more mild disease process while others very severe and often life-threatening. Your doctors will not be able to predict your next flare and how it will affect your body. You may achieve total remission or suffer daily from the ups and downs with lupus. The only predictable thing about this disease is that it is unpredictable. As time goes on, you’ll know faster than any blood test could tell you that you’re getting ready to flare up.
Know your limitations. Take frequent breaks. Eat healthy. Don’t try to overdo it. It’s okay to cancel those dinner plans. Living with Lupus isn’t easy, but you can learn to live with it just as I have.
Sources: Lupus Foundation of America
www.lupus.org