FOR THE NEWLY DIAGNOSED

Written by Patrick O’Connor

Used by permission

The immediate time period after being diagnosed with lymphedema can be a confusing and frightening time.  In one sense, there may be relief - finally there is a name to this awful "thing" that has attacked your body.  But there is also a bewildering amount of emotions – fear - questions of what do I do now and where do I turn to begin dealing with this condition.  I wanted to share a few ideas that hopefully can make this period a little smoother and help give a bit of direction.

Acceptance and Denial

You may go through a time when you try to say to yourself that this swelling will just go away by itself or that you don't really have to do anything about it and that it may not matter much anyway.  But as hard as this is to say, the reality is that if you have lymphedema, it just isn't going to go away by itself.  It isn't a medical condition that you can just ignore and hope for the best.  While there is no present cure, there is treatment available that can help manage it and help you get back on track with your life.  It is so very important to understand this and to get into a treatment program as soon as you can.

Point To Ponder:  Acceptance doesn't mean surrender or giving up to lymphedema.

Education - Being Proactive

As you may have already experienced, there is a great deal of ignorance in the medical profession about lymphedema.  Sometimes it takes years for a diagnosis, and after even that is achieved, most doctors really don't know what to do next.

That is why it is critical that we, as lymphedema patients, take the initiative and proactively educate ourselves on every aspect on the condition.  You will want to find out what lymphedema is, what it does, what to expect from it, how to have the correct treatment and perhaps most important, how to have a full and meaningful life even with it.

You will also want to educate yourself so you will not be fooled by or damaged by all the very bad misinformation out there regarding lymphedema and the lymph system.  I've noticed that in the last couple years, the lymph system has become a buzzword in the cyber-world and there are all too many uneducated and madly informed people trying to sell pills, potions, and promises of quick cures.  Unfortunately, often these supposed cures cause more damage and can even endanger your life.

The good thing is that there are many excellent websites that you can go to and find solid, credible, life-giving information.  There is The Canadian Lymphedema Framework, The Lymphatic Education and Research Network, the National Lymphedema Network, Circle of Hope Lymphedema Foundation and the Australasian Lymphology Association.

Point To Ponder:  Knowledge is Empowerment.  Remember the life you save, may be your own.

Compliance with Your Treatment Program

Once you have finally gotten that diagnosis, it is equally important that you get referral to a trained and certified lymphedema therapist.  Lymphedema therapists are among our best friends and they actually do more on a day-to-day basis to help us then doctors actually do.  But, sadly as so many therapist will tell you, the number one reason their patients don't get better or even experience a worsening of their lymphedema, is the failure of the patient to be compliant with the prescribed treatment program.

We all understand the fatigue, the pain and the depression that can come with lymphedema.  But, my friend, the truth is that it is up to you to work with your therapist as a team to insure you get the most out of your treatment.

Point To Ponder:  It is your life and your responsibility to do all that you can to help yourself.

Anger, Bitterness, and Self-Pity

After that diagnosis, you will go through a period of intense emotional conflict.  You may swing from anger, to feeling bitter that this has happened to you, and start feeling sorry for yourself.  Please understand, this is totally normal and yes, you do have a right to experience those feelings.  Actually, if you didn't, I would really be concerned for you.  But the key is not to stop with either of those emotions.  They are to me, the triple malignancies of the spirit.  They have destroyed more lives throughout history then all the medical conditions combined.  Work your way through them.  Keep pressing forward, knowing that this terrible time of emotional struggle ends.  The following is something I do each morning and it really has made a difference in my life.

Point To Ponder:  Every morning, before you start your day, ask God to help you be a source of joy, hope, and encouragement to another person.

Don't Stop Living Life

When you are first diagnosed, it is easy to be overwhelmed.  You feel like your whole life is over with and you will never be able to do anything you love doing again.  Please, believe me when I say, that is simply not true.  Lymphedema isn't about giving up and quitting life, it is about adaptation.  You may need to change how you do things, figure out new and less strenuous ways of working and in your recreational pursuits.  But it doesn't mean to have to stop everything you are used to enjoying.  Besides, if that were true, why even be alive?

If you do find there may be one particular activity you cannot do anymore, find another to replace it with.  It is impossible for me to spend all day (lol..even a couple of hours) working in my garden.  But, I am able to sit at a computer and reach out to help others with lymphedema.

There just are too many wonderful activities, hobbies and interests to pursue to crawl into a cave and hide.

Point To Ponder:  If one dream is taken away, God will send another even more special to replace it.

In conclusion, yes, it can be devastating to be diagnosed with and stricken by lymphedema.  But, I honestly do believe, it ultimately comes down to how we choose to handle it.  Do we choose to surrender or do we choose to have a meaningful and joyous life despite lymphedema?

LIFE IS A CELEBRATION OF THAT WHICH WE CAN DO,

NOT A REQUIEM FOR THAT WE CAN NOT DO.

Pat is the ‘Papa-Bear', his education includes degrees in History, Political Science and Social Science, with graduate studies in philosophy and religion.  Professional designations include Certification in Customer Service Management, Advanced Certification Patient Account Representative, formerly licensed in Life and Health Insurance (Oregon).  Pat is a beautiful person, a father, a grandfather, and an inspiration to many.